Our son, our baby, turned three years old last week! He is really growing up fast. We're having a party for him today to celebrate his birthday and we're finally going to cut his hair! YEAH!
Some people in the Jewish religion, wait until a boy turns three years of age before they cut his hair. Once they turn three they throw a birthday party/haircutting ceremony called an Upshern:
http://en.wikipedia.org/wiki/Upsherin
Once his hair is cut, he puts on his kippah and tzitzit. Our son's hair is almost to his tush, it's long, curly on the bottom and dirty blond. Once we cut his hair it will be short and probably all brown but most of all it will make him look like a big boy. I don't think I am ready.
The days are long and the years fly by!
He is our fifth and last child. With four sisters, he has more "Mommys", than he knows what to do with. He is one of the most loved little boys on the planet. He is also very spoiled, his poor wife will be very upset with us one day. LOL!
We hope that this Upshern (haircutting ceremony) will one of many, many more joyous occasions in his life.
We love you Y! You're a sweet, little, handsome, friend and pal. You make us HAPPY every day!
Happy Birthday to our sweet baby boy!
- Shayna
October 9, 2011
September 9, 2011
In Hospital - Blood Clotting, Chest Pains, Aggrenox
I was in the hospital two weeks ago for about three days.
It all started when I was at home and I started feeling some sharp pains in my chest. I felt the first sharp pain, it lasted about a minute and I thought it's probably heartburn and I was going to let it go. About ten minutes later I felt another chest pain, also lasting about one minute and I thought this is odd. Then right after the chest pain subsided, I felt a horrible pain in my left arm and another chest pain followed shortly after. Thank G-D, my Mom was visiting and I told her what was happening and then I threw up. My Mom said just to be sure we should call an ambulance and rule out a heart attack. I then explained that if it's not I am going to feel really stupid, maybe I should just lay down for a while. My Mom then SCREAMED, if you are wrong you will feel really DEAD which would you prefer? We called an ambulance.
The paramedics came in and did a twelve lead EKG test which came back slightly abnormal so we went to the emergency room. They said they needed to keep me over night in order to complete a full cardiac workup. Which included every test under the sun, an IV (which was never needed) and they drew blood from me every hour (or at least it felt like that). I stayed for almost three days because they need to draw blood three times at different times of the day to test your blood enzymes to rule out a heart attack. The cardiac doctor came on day two in the hospital and said all my tests looked fine and that whatever was going on was not cardiac related.
For information about signs of a heart attack, please visit this website:
http://www.heart.org/HEARTORG/Conditions/Conditions_UCM_305346_SubHomePage.jsp
The chest pain stopped shortly after I got to the ER, of course. But the left arm pain and left leg pain never subsided. The pain was there the whole time I was in the hospital. On day three in the hospital my hematologist / oncologist came in to see me. He said that the leg and arm pain were due to my blood clotting from my Essential Thrombocythemia (Blood Platelet Disorder).
I am still going to be taking my Hydroxyurea (HU) 500mg, three times a day and now I have to take a new medication called Aggrenox, two time per day. Aggrenox is a blood thinner and aspirin all in one, so far I have not experienced any side effects. I am still exhausted, which I am still positive has to do with the Hydroxyurea. Still the exhaustion beats not taking the HU and my platelet level rising so high that I have a major stroke.
The following links are for anyone looking for more information about Hydroxyurea or Aggrenox:
AGGRENOX - http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001061/
HYDROXYUREA - http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682004.html
Please remember that I am not a medical professional. This is just my experiences with my illnesses. If you're not feeling well, you should see a medical professional, ASAP.
Also, all my kids have been passing a cold around (school is back in session) which made it's way to me and flared up my Asthma.
Hopefully, everyone will be feeling better by next week.
I hope all is well with everyone.
Take Care - Shayna
It all started when I was at home and I started feeling some sharp pains in my chest. I felt the first sharp pain, it lasted about a minute and I thought it's probably heartburn and I was going to let it go. About ten minutes later I felt another chest pain, also lasting about one minute and I thought this is odd. Then right after the chest pain subsided, I felt a horrible pain in my left arm and another chest pain followed shortly after. Thank G-D, my Mom was visiting and I told her what was happening and then I threw up. My Mom said just to be sure we should call an ambulance and rule out a heart attack. I then explained that if it's not I am going to feel really stupid, maybe I should just lay down for a while. My Mom then SCREAMED, if you are wrong you will feel really DEAD which would you prefer? We called an ambulance.
The paramedics came in and did a twelve lead EKG test which came back slightly abnormal so we went to the emergency room. They said they needed to keep me over night in order to complete a full cardiac workup. Which included every test under the sun, an IV (which was never needed) and they drew blood from me every hour (or at least it felt like that). I stayed for almost three days because they need to draw blood three times at different times of the day to test your blood enzymes to rule out a heart attack. The cardiac doctor came on day two in the hospital and said all my tests looked fine and that whatever was going on was not cardiac related.
For information about signs of a heart attack, please visit this website:
http://www.heart.org/HEARTORG/Conditions/Conditions_UCM_305346_SubHomePage.jsp
The chest pain stopped shortly after I got to the ER, of course. But the left arm pain and left leg pain never subsided. The pain was there the whole time I was in the hospital. On day three in the hospital my hematologist / oncologist came in to see me. He said that the leg and arm pain were due to my blood clotting from my Essential Thrombocythemia (Blood Platelet Disorder).
I am still going to be taking my Hydroxyurea (HU) 500mg, three times a day and now I have to take a new medication called Aggrenox, two time per day. Aggrenox is a blood thinner and aspirin all in one, so far I have not experienced any side effects. I am still exhausted, which I am still positive has to do with the Hydroxyurea. Still the exhaustion beats not taking the HU and my platelet level rising so high that I have a major stroke.
The following links are for anyone looking for more information about Hydroxyurea or Aggrenox:
AGGRENOX - http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001061/
HYDROXYUREA - http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682004.html
Please remember that I am not a medical professional. This is just my experiences with my illnesses. If you're not feeling well, you should see a medical professional, ASAP.
Also, all my kids have been passing a cold around (school is back in session) which made it's way to me and flared up my Asthma.
Hopefully, everyone will be feeling better by next week.
I hope all is well with everyone.
Take Care - Shayna
August 18, 2011
Update on Summer, Essential Thrombocythemia - E.T. and Meds
I am so sorry that I have not posted since July! It has been a crazy summer to say the least.
All five kids stayed home this summer and I was the acting cruise director. UGH! The kids actually did pretty well. They spent time with their grandparents and we went on a lot of day trips.
Thank G-D for my oldest daughter who helped me a lot with the kids this summer! I was able to do my work thanks to her help. We did some special one on one things together when Dad was home. She is really growing up into a beautiful young woman.
My hematologist/oncologist said that he wanted to give me a solid two months before he checked my blood again to determine whether we can start weening off the Hydroxyurea (HU). I will be going to the Dr. next week and I will post an update. (I am wondering if he wanted to wait for two months because he knew the kids were going to be home and I would bring them in with me? Hummmmm LOL) Meanwhile, the HU is still making me so tired. Also, my teeth are starting to have a lot of problems. I am wondering if this is a side effect of the meds? I never really had any issues before my diagnosis with Essential Thrombocythemia.
I hope everyone out there is doing well and I will start posting regularly soon! The kids go back to school on Monday! =)
- Shayna
All five kids stayed home this summer and I was the acting cruise director. UGH! The kids actually did pretty well. They spent time with their grandparents and we went on a lot of day trips.
Thank G-D for my oldest daughter who helped me a lot with the kids this summer! I was able to do my work thanks to her help. We did some special one on one things together when Dad was home. She is really growing up into a beautiful young woman.
My hematologist/oncologist said that he wanted to give me a solid two months before he checked my blood again to determine whether we can start weening off the Hydroxyurea (HU). I will be going to the Dr. next week and I will post an update. (I am wondering if he wanted to wait for two months because he knew the kids were going to be home and I would bring them in with me? Hummmmm LOL) Meanwhile, the HU is still making me so tired. Also, my teeth are starting to have a lot of problems. I am wondering if this is a side effect of the meds? I never really had any issues before my diagnosis with Essential Thrombocythemia.
I hope everyone out there is doing well and I will start posting regularly soon! The kids go back to school on Monday! =)
- Shayna
June 17, 2011
Hydroxyurea - Update
I went to the oncologist (I still can't believe I have an oncologist in my 30's!) last week and my platelet count is still high 650,000. 5,000 less than last month but not a great improvement. He was hoping to be able to decrease my Hydroxyurea (HU) or see how I fared without taking the meds all together. Instead, I need to stay on my 1,500 mg (3 pills) per day of HU, 1 baby aspirin per day and 1 Iron pill per day!
I told the doctor that all five kids will be home with me this summer, (no summer camp here, we are just trying to keep up with the bills), and he said I don't have to come in for another two months. LOL! =)
Hopefully, in two months time, my numbers will have come down enough to reduce my dose of HU! I really don't want to have keep taking a chemo drug for 40 years! The exhaustion is a lot to handle when you are trying to raise five kids. Actually, scratch that, I think it would be a lot for anyone to handle.
No matter how I feel: exhausted, overwhelmed, scared ... the thing I feel the most is, BLESSED!
I am ALIVE! I am with my family and while annoying, this is a disease I can live with for many, many years - Please G-D!
I will posts more updates soon. I hope everyone is doing well!
- Shayna
I told the doctor that all five kids will be home with me this summer, (no summer camp here, we are just trying to keep up with the bills), and he said I don't have to come in for another two months. LOL! =)
Hopefully, in two months time, my numbers will have come down enough to reduce my dose of HU! I really don't want to have keep taking a chemo drug for 40 years! The exhaustion is a lot to handle when you are trying to raise five kids. Actually, scratch that, I think it would be a lot for anyone to handle.
No matter how I feel: exhausted, overwhelmed, scared ... the thing I feel the most is, BLESSED!
I am ALIVE! I am with my family and while annoying, this is a disease I can live with for many, many years - Please G-D!
I will posts more updates soon. I hope everyone is doing well!
- Shayna
June 3, 2011
Preschool Graduation
Our youngest daughter, graduated from preschool last night! She's the youngest of four girls (13,11, 7 & 5), she's our baby girl.
To quote a song from one of my favorite movies: Sunrise, Sunset, quickly fly the years! Where is the little girl I carried?
All week long, people have been asking her if she is excited to graduate and her response is: "What is there to be excited about? I won't get to see my friends anymore and I am really going to miss my teachers!"
She is a very loving, emotional, sensative, kind, caring, and feisty little girl and we wouldn't have her any other way! She is our Princess and Beauty and we couldn't be more proud of her!
The days are long but the years fly by! Before I know it, I will blink and it will be her wedding day!
- Shayna
To quote a song from one of my favorite movies: Sunrise, Sunset, quickly fly the years! Where is the little girl I carried?
All week long, people have been asking her if she is excited to graduate and her response is: "What is there to be excited about? I won't get to see my friends anymore and I am really going to miss my teachers!"
She is a very loving, emotional, sensative, kind, caring, and feisty little girl and we wouldn't have her any other way! She is our Princess and Beauty and we couldn't be more proud of her!
The days are long but the years fly by! Before I know it, I will blink and it will be her wedding day!
- Shayna
June 1, 2011
Sore on Tongue and Sore Throat
I finally went to the doctor today, he says that I have some post nasal drip which is making my throat feel irritated. My doctor said I should take Mucinex.
The sore on the tongue was nothing, just a result of badly biting my tongue the other day.
I go to the hematologist/oncologist on Tuesday and I will post an update.
Getting ready for summer break. I'm happy there will be no homework, unhappy that I will be the acting cruise director, for all five kids, for two months. =)
I hope all is well with everyone!
- Shayna
The sore on the tongue was nothing, just a result of badly biting my tongue the other day.
I go to the hematologist/oncologist on Tuesday and I will post an update.
Getting ready for summer break. I'm happy there will be no homework, unhappy that I will be the acting cruise director, for all five kids, for two months. =)
I hope all is well with everyone!
- Shayna
May 30, 2011
May 26, 2011
Sore On The Bottom Of My Tongue and Fatigue
Hello to everyone, sorry it has been a while since my last post. It's been a crazy time, trying to wrap up the school year for all the kids.
Everything is okay. My last visit to the doctor went fine, my numbers are coming back down, I think my platelet count was about 550,000. I am still feeling very fatigue and my doctor still dismisses it at every appointment and says he thinks it has nothing to do with the Hydroxyurea. BUT I DO! I am continuing to take all my meds everyday and we'll see how it goes. Also, I still have the pins and needles sensations up and down my left arm.
I bit my tongue this past Saturday and it hurt but I thought it would go away soon. The tongue is suppose to be one of the fastest healing parts of our bodies. It has been four days and it hurts more! I looked and on the bottom of my tongue I have a few little white bumps in a line (they don't look like cold sores) and the back of my tongue on the bottom looks black. Hummm? I looked some stuff up and it could be a side effect of the Hydroxyurea or from my anemia. I am going to have my family doctor check it out tomorrow and I will post the results. Hopefully it's nothing.
Again, sorry it took so long to post but the count down is on, the school year is almost over! YEAH! Looking forward to a homework free summer!
I hope everyone is doing well and I will post after I see the doctor.
Take Care -
Shayna
Everything is okay. My last visit to the doctor went fine, my numbers are coming back down, I think my platelet count was about 550,000. I am still feeling very fatigue and my doctor still dismisses it at every appointment and says he thinks it has nothing to do with the Hydroxyurea. BUT I DO! I am continuing to take all my meds everyday and we'll see how it goes. Also, I still have the pins and needles sensations up and down my left arm.
I bit my tongue this past Saturday and it hurt but I thought it would go away soon. The tongue is suppose to be one of the fastest healing parts of our bodies. It has been four days and it hurts more! I looked and on the bottom of my tongue I have a few little white bumps in a line (they don't look like cold sores) and the back of my tongue on the bottom looks black. Hummm? I looked some stuff up and it could be a side effect of the Hydroxyurea or from my anemia. I am going to have my family doctor check it out tomorrow and I will post the results. Hopefully it's nothing.
Again, sorry it took so long to post but the count down is on, the school year is almost over! YEAH! Looking forward to a homework free summer!
I hope everyone is doing well and I will post after I see the doctor.
Take Care -
Shayna
April 27, 2011
High Blood Pressure & Paresthesia (Pins and Needles)
At my last appointment with the hematologist/oncologist my blood pressure was high. Not sure why, I have never had high blood pressure before. The doctor said that high blood pressure could be caused by many things: how much water and salt you have in your body, the condition of your kidneys, nervous system, or blood vessels, the levels of different body hormones, weight, etc. I checked my blood pressure today and it was fine so hopefully it was just a one time thing.
I am also experiencing Parenthesis (pins and needles) sensations again, always in my left arm. I am taking my meds everyday so I am not sure why I am still experiencing these sensations. Sometimes, it feels like little bugs are crawling under my skin - UGH!
I have an appointment with the doctor during the first week of May. I will post an update after my appointment.
I hope everyone is doing well.
- Shayna
I am also experiencing Parenthesis (pins and needles) sensations again, always in my left arm. I am taking my meds everyday so I am not sure why I am still experiencing these sensations. Sometimes, it feels like little bugs are crawling under my skin - UGH!
I have an appointment with the doctor during the first week of May. I will post an update after my appointment.
I hope everyone is doing well.
- Shayna
April 18, 2011
Passover
For those who celebrate Passover - Happy Kosher Passover to you and your family!
For those who want to know more about Passover, please click here:
http://www.aish.com/h/pes/t/g/48959286.html
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For those who celebrate Easter - I hope you have a wonderful holiday and don't eat too many chocolate bunnies! =)
- Shayna
8 Month Old Baby Hears For The First Time - AMAZING!
Hydroxyurea, Exhaustion and Gratefulness
For those of you reading my blog you will be able to note my post about being non-compliant with medication, primarily taking my Hydroxyurea (HU) everyday!
I saw the doctor two weeks ago and he made me understand why I need to take my meds everyday. I have been very good and I have been taking my HU, Hemex and baby aspirin everyday. I have also noticed that my level of exhaustion has increased astronomically!
I have mentioned to the doctor on many occasions that I have been feeling extreme fatigue and most of the time he says it could be from anything but it's not from the HU.
I found the information listed below about Hydroxyurea on Wikipedia:
http://en.wikipedia.org/wiki/Hydroxyurea
Reported side-effects are: drowsiness, nausea, vomiting and diarrhea, constipation, mucositis, anorexia, stomatitis, bone marrow toxicity (which may take 7–21 days to recover after the drug has been discontinued), alopecia (hair loss), skin changes, abnormal liver enzymes, creatinine and blood urea nitrogen.
Due to its effect on the bone marrow, regular monitoring of the full blood count is vital, as well as early response to possible infections. In addition, renal function, uric acid and electrolytes, as well as liver enzymes, are commonly checked.
Hydroxycarbamide has been used primarily for the treatment of myeloproliferative diseases, which has an inherent risk of transforming to acute myeloid leukemia. There has been a longstanding concern that hydroxycarbamide itself carries a leukemia risk, but large studies have shown that the risk is either absent or very small. Nevertheless, it has been a barrier for its wider use in patients with sickle-cell disease.
How can my doctor just dismiss my fatigue? I am sure it's because he feels the benefits of the HU, outweigh the fatigue. I know that the doctor is right about the meds but it would be nice for my fatigue to be acknowledged as more than just something in my head.
Also, of all the symptoms listed above, I have the following: drowsiness, constipation, and my hair is thinning......but
I AM ALIVE!
I have not had a major stroke, heart attack, blood clot, etc. The medication is working to bring my platelet count down to a safe level.
I am upset about having to take chemo pills everyday but I am grateful for the results.
Does anyone else out there taking HU, experience extreme fatigue?
Thank you for letting me share my journey with you and thank you for sharing yours with me!
I hope everyone is doing well -
Shayna
I saw the doctor two weeks ago and he made me understand why I need to take my meds everyday. I have been very good and I have been taking my HU, Hemex and baby aspirin everyday. I have also noticed that my level of exhaustion has increased astronomically!
I have mentioned to the doctor on many occasions that I have been feeling extreme fatigue and most of the time he says it could be from anything but it's not from the HU.
I found the information listed below about Hydroxyurea on Wikipedia:
http://en.wikipedia.org/wiki/Hydroxyurea
Reported side-effects are: drowsiness, nausea, vomiting and diarrhea, constipation, mucositis, anorexia, stomatitis, bone marrow toxicity (which may take 7–21 days to recover after the drug has been discontinued), alopecia (hair loss), skin changes, abnormal liver enzymes, creatinine and blood urea nitrogen.
Due to its effect on the bone marrow, regular monitoring of the full blood count is vital, as well as early response to possible infections. In addition, renal function, uric acid and electrolytes, as well as liver enzymes, are commonly checked.
Hydroxycarbamide has been used primarily for the treatment of myeloproliferative diseases, which has an inherent risk of transforming to acute myeloid leukemia. There has been a longstanding concern that hydroxycarbamide itself carries a leukemia risk, but large studies have shown that the risk is either absent or very small. Nevertheless, it has been a barrier for its wider use in patients with sickle-cell disease.
How can my doctor just dismiss my fatigue? I am sure it's because he feels the benefits of the HU, outweigh the fatigue. I know that the doctor is right about the meds but it would be nice for my fatigue to be acknowledged as more than just something in my head.
Also, of all the symptoms listed above, I have the following: drowsiness, constipation, and my hair is thinning......but
I AM ALIVE!
I have not had a major stroke, heart attack, blood clot, etc. The medication is working to bring my platelet count down to a safe level.
I am upset about having to take chemo pills everyday but I am grateful for the results.
Does anyone else out there taking HU, experience extreme fatigue?
Thank you for letting me share my journey with you and thank you for sharing yours with me!
I hope everyone is doing well -
Shayna
April 15, 2011
Hemex - Prescription Iron / Vitamin Pills
I called CVS today to pick up my prescription for Hemex which is an Iron / vitamin pill. They said that they are out of the medication and that the manufacturer is so far behind with making the drug that they will not have any more until June! WOW!
Thank G-D my doctor had some samples to give me but how unprofessional on the manufacturers part. Also, the doctor said if I run out before they can get more, I can take over the counter Iron pills - but they make my stomach hurt, a lot!
What if this would've been my chemo meds, my Hydroxyurea? It makes me wonder and it makes me feel more than a little bit nervous!
Other than this, I am taking all my meds, on time and every day. All the meds make me very tired and I am still feeling a lot of pins and needle sensations and they're always on my left side.
Busy getting ready for Passover in our house, it's so crazy the amount of stuff that has to be done for eight days! One of the best things about the prep for the holiday is that, if your like me, a procrastinator - you have no choice, you have to do your Spring cleaning. =)
I hope everyone is doing well -
Shayna
Thank G-D my doctor had some samples to give me but how unprofessional on the manufacturers part. Also, the doctor said if I run out before they can get more, I can take over the counter Iron pills - but they make my stomach hurt, a lot!
What if this would've been my chemo meds, my Hydroxyurea? It makes me wonder and it makes me feel more than a little bit nervous!
Other than this, I am taking all my meds, on time and every day. All the meds make me very tired and I am still feeling a lot of pins and needle sensations and they're always on my left side.
Busy getting ready for Passover in our house, it's so crazy the amount of stuff that has to be done for eight days! One of the best things about the prep for the holiday is that, if your like me, a procrastinator - you have no choice, you have to do your Spring cleaning. =)
I hope everyone is doing well -
Shayna
April 7, 2011
If Moses Had Facebook / A Laptop
Loved this - I have never laughed so hard!
Thank you to: http://jewishmom.com/ this was great!
Enjoy - Shayna
April 5, 2011
Non Compliant With Medication - Not A Good Thing To Be!
I went to the hematologist today to check my platelet counts, etc. My count went back up from 500,000 to 715,000 and my iron was very low! Also, for the first time, I had slightly high blood pressure. I have had some trouble remembering to take my meds and I have also just skipped them from time to time (I know, I know, read on).
I take 1500 mg a day of Hydroxyurea (the chemo med) and it makes me so tired! I feel like I could sleep all day and night. Some days, I don't want to feel so exhausted! I thought it would be okay, if I missed/skipped a dose here and there but according to the doctor and my platelet count, it's NOT!
The doctor looked mad at me and I started crying. I told him about the fatigue and I told them that I don't want to take these meds for 20 - 30 years and increase my odds for Acute Leukemia down the road. I told him I want to see my grandchildren. His response was that if I don't start taking my meds properly, I could have a stroke or blood clot and not be around for my kids! I got the message!
Also, he told me that the reason I am so tired is probably because my iron count is low, not the Hydroxyurea.
My husband is going to remind me everyday and set my cell phone to remind me as well. My next appointment is in a month, hopefully my numbers will be better.
I was trying to forget about the reality of my disease but I guess your body will always find ways to remind you!
I hope everyone is doing well. Every day is a new day!
- Shayna
I take 1500 mg a day of Hydroxyurea (the chemo med) and it makes me so tired! I feel like I could sleep all day and night. Some days, I don't want to feel so exhausted! I thought it would be okay, if I missed/skipped a dose here and there but according to the doctor and my platelet count, it's NOT!
The doctor looked mad at me and I started crying. I told him about the fatigue and I told them that I don't want to take these meds for 20 - 30 years and increase my odds for Acute Leukemia down the road. I told him I want to see my grandchildren. His response was that if I don't start taking my meds properly, I could have a stroke or blood clot and not be around for my kids! I got the message!
Also, he told me that the reason I am so tired is probably because my iron count is low, not the Hydroxyurea.
My husband is going to remind me everyday and set my cell phone to remind me as well. My next appointment is in a month, hopefully my numbers will be better.
I was trying to forget about the reality of my disease but I guess your body will always find ways to remind you!
I hope everyone is doing well. Every day is a new day!
- Shayna
March 28, 2011
False Sense Of Wellness?
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
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 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
February 28, 2011
Nothing Better
I was putting my five year old daughter to bed tonight and she looked up at me and said,
"Mommy, I make your heart shine!"
There is nothing better!
I hope everyone is doing well.
- Shayna
"Mommy, I make your heart shine!"
There is nothing better!
I hope everyone is doing well.
- Shayna
February 23, 2011
Platelet Count Is Down To 530,000!
For the last two weeks my platelet count has dropped down to 530,000! Yippie! =) I am so happy.
When my journey with Essential Thrombocythemia began in January, my platelet count was about one million. I was put on 1000mg of Hydroxyurea, when that didn't work I went up to 1500mg and then finally a dose of 2500mg.
Now that my platelet count has dropped to decent levels (still high but much better than one million), the doctor has dropped my Hydroxyurea back down to 1500mg per day and I only have to go to the doctor's office every two weeks!
I am hoping things will continue to go well so that I can get off Hydroxyurea all together and just take one baby aspirin per day. The doctor said this is down the line a bit and when they do put me on aspirin only, it's really just a drug vacation and my platelet numbers will eventually go back up and I will have to take Hydroxyurea again. There is no cure for Essential Thrombocythemia. But for now, I will try to take it one day at a time.
I will continue to update everyone on my appointments.
I hope all is well with everyone!
- Shayna
When my journey with Essential Thrombocythemia began in January, my platelet count was about one million. I was put on 1000mg of Hydroxyurea, when that didn't work I went up to 1500mg and then finally a dose of 2500mg.
Now that my platelet count has dropped to decent levels (still high but much better than one million), the doctor has dropped my Hydroxyurea back down to 1500mg per day and I only have to go to the doctor's office every two weeks!
I am hoping things will continue to go well so that I can get off Hydroxyurea all together and just take one baby aspirin per day. The doctor said this is down the line a bit and when they do put me on aspirin only, it's really just a drug vacation and my platelet numbers will eventually go back up and I will have to take Hydroxyurea again. There is no cure for Essential Thrombocythemia. But for now, I will try to take it one day at a time.
I will continue to update everyone on my appointments.
I hope all is well with everyone!
- Shayna
February 21, 2011
Just Go With It - Great Movie!
I went to see the movie, Just Go With It, tonight and it was really FUNNY! It was cool funny, not gross funny. Anyone looking for a movie that will make them laugh out loud, should go see this movie.
I hope everyone had a great weekend!
P.S. - I go back to talk to the doctor on Tuesday and I will post about my appointment Tuesday night.
- Shayna
I hope everyone had a great weekend!
P.S. - I go back to talk to the doctor on Tuesday and I will post about my appointment Tuesday night.
- Shayna
February 16, 2011
February 14, 2011
Paresthesia (Pins and Needles) - Caused From Stress?
Lately, I have been wondering, is my Paresthesia (Pins and Needles sensations) caused by my Essential Thrombocythemia, Stress or could it be both?
I have noticed, a link, to the sensation being worse when I am stressed out. Another, odd link, I noticed is that the sensations are always located on my left side only! Hummmmmmm, I wonder?
Anyone have any thoughts?
I am going to ask the Doctor about it next week. I go back this Tuesday for blood work only.
For those of you who celebrate Valentine's Day, I hope it's filled with love and candy!
- Shayna
I have noticed, a link, to the sensation being worse when I am stressed out. Another, odd link, I noticed is that the sensations are always located on my left side only! Hummmmmmm, I wonder?
Anyone have any thoughts?
I am going to ask the Doctor about it next week. I go back this Tuesday for blood work only.
For those of you who celebrate Valentine's Day, I hope it's filled with love and candy!
- Shayna
February 9, 2011
I DID NOT ADD LINKS TO MY POSTS!
I was checking my blog the other day and I noticed that ads are linking to words in my posts. I did not sign up for this and I am trying to remove these links from my blog!
I think the ads are coming from Blogger/Google's AdSense program but I did not sign up for this and I cannot figure out how to remove it from my posts. I searched the HTML code and I cannot figure out how they have linked into my blog! HELP!
If anyone can give me any advice that would greatly appreciated.
- Shayna
I think the ads are coming from Blogger/Google's AdSense program but I did not sign up for this and I cannot figure out how to remove it from my posts. I searched the HTML code and I cannot figure out how they have linked into my blog! HELP!
If anyone can give me any advice that would greatly appreciated.
- Shayna
February 2, 2011
Pins and Needles - Paresthesia - ER
Monday, during carpool, my left arm started tingling and felt so incredibly painful. I was going to just let it go but with my Essential Thrombocythemia (which can cause blood clots, etc.) I was very worried. I have had this pins and needles sensation since the beginning of my diagnosis.
Pins and needles in my left foot, was what made me go get blood work done with my doctor. I thought that I would be diagnosed with Diabetes because I had gestational diabetes when I was pregnant with my last child. Needless to say it was not Diabetes.
The doctors say the pins and needles sensation is caused from my blood sludging / thickening from the high amount of platelets I have in my body. Most of time it's just annoying but on Monday it felt horrible, painful and the sensation traveled from my left arm to the left side of my face and head.
I went to the ER and they did another CAT scan and an ultrasound of the veins in my left arm. They found nothing, which is good news. I was released that evening.
I really want the 2500mg of Hydroxyurea to start working so that my platelet numbers will come down! Think good thoughts!
I go back to the doctors on Tuesday and I will post another update.
Thank you for letting me share my journey with you.
- Shayna
Pins and needles in my left foot, was what made me go get blood work done with my doctor. I thought that I would be diagnosed with Diabetes because I had gestational diabetes when I was pregnant with my last child. Needless to say it was not Diabetes.
The doctors say the pins and needles sensation is caused from my blood sludging / thickening from the high amount of platelets I have in my body. Most of time it's just annoying but on Monday it felt horrible, painful and the sensation traveled from my left arm to the left side of my face and head.
I went to the ER and they did another CAT scan and an ultrasound of the veins in my left arm. They found nothing, which is good news. I was released that evening.
I really want the 2500mg of Hydroxyurea to start working so that my platelet numbers will come down! Think good thoughts!
I go back to the doctors on Tuesday and I will post another update.
Thank you for letting me share my journey with you.
- Shayna
January 25, 2011
High Platelet Count - Again
I went back to the doctor today and my platelet count is back on the rise. Last week it was about 740,000 and now it's around 850,000! The doctor cannot explain why it's back up, the only thing he could say is that it may take a while to get the right level of medication.
The doctor has increased my daily dose of chemo (Hydroxyurea) from 2000mg to 2500mg, that's five 500mg pills per day. I am also still taking one small baby aspirin and one Hemex (Iron) pill per day. We shall see if this dose works but it make me very nervous to have to take such large amount of this drug!
I will go back to the doctors office again next week, for blood work and then I will see the doctor again in two weeks. I will keep everyone posted. Wish me luck, that the medication will work and my blood platelet numbers will start coming down.
I hope everyone is doing well.
- Shayna
The doctor has increased my daily dose of chemo (Hydroxyurea) from 2000mg to 2500mg, that's five 500mg pills per day. I am also still taking one small baby aspirin and one Hemex (Iron) pill per day. We shall see if this dose works but it make me very nervous to have to take such large amount of this drug!
I will go back to the doctors office again next week, for blood work and then I will see the doctor again in two weeks. I will keep everyone posted. Wish me luck, that the medication will work and my blood platelet numbers will start coming down.
I hope everyone is doing well.
- Shayna
Anniversary - Almost Eight Years!
I heard this song on the radio the other day and it made me remember that it's almost eight years since my husband and I got married. I realize that this song is about someone who is trying to get up the nerve to ask a girl to marry him but I just think it's so sweet!
If I don't say it enough - "I LOVE YOU" and I am so happy I married you!
- Shayna
If I don't say it enough - "I LOVE YOU" and I am so happy I married you!
- Shayna
January 18, 2011
High Platelet Count Update - Good News
I went to the doctors today and I got good news. =)
After one week on a doubled dose of Hydroxyurea (HU) 2000mg, my platelet count is coming down! My count was 940,000 and now it's ..... 747,000! My platelet count is still very high considering that a normal count should be between 140,000 - 400,000 but I will take a 747,000 platelet count because it means the HU is working!
My white blood cell count, HCT (packed cell volume) & HGB (Hemoglobin) counts were all a little low. I believe these results just mean I am a bit anemic. I am already taking an Iron supplement everyday, I may have to take two each day instead of one.
I didn't get to see the doctor today, I just had to go in for a blood draw. I will get to meet with the doctor next Tuesday and I will post another update.
Also, thankfully, my family and I are finally starting to recover from the Strep and Flu attack that invaded our home. =)
I hope everyone is doing well.
- Shayna
After one week on a doubled dose of Hydroxyurea (HU) 2000mg, my platelet count is coming down! My count was 940,000 and now it's ..... 747,000! My platelet count is still very high considering that a normal count should be between 140,000 - 400,000 but I will take a 747,000 platelet count because it means the HU is working!
My white blood cell count, HCT (packed cell volume) & HGB (Hemoglobin) counts were all a little low. I believe these results just mean I am a bit anemic. I am already taking an Iron supplement everyday, I may have to take two each day instead of one.
I didn't get to see the doctor today, I just had to go in for a blood draw. I will get to meet with the doctor next Tuesday and I will post another update.
Also, thankfully, my family and I are finally starting to recover from the Strep and Flu attack that invaded our home. =)
I hope everyone is doing well.
- Shayna
January 14, 2011
STREP & FLU
The Strep and Flu viruses have invaded our home.
The two kids that were sick with Strep, both got the antibotic shot. One quick stick and they started feeling better and an added bonus was that I didn't have to remember to give them their meds twice a day. =)
The other kids (except our oldest) and I, have the Flu virus. It really sucks, there is no time to get better when you are taking care of the kids and they're coughing all over you.
We have some Jewish Penicillin (Matzo Ball Soup) cooking on the stove right now. Hopefully, everyone will feel better soon.
I hope everyone has a great weekend!
- Shayna
The two kids that were sick with Strep, both got the antibotic shot. One quick stick and they started feeling better and an added bonus was that I didn't have to remember to give them their meds twice a day. =)
The other kids (except our oldest) and I, have the Flu virus. It really sucks, there is no time to get better when you are taking care of the kids and they're coughing all over you.
We have some Jewish Penicillin (Matzo Ball Soup) cooking on the stove right now. Hopefully, everyone will feel better soon.
I hope everyone has a great weekend!
- Shayna
January 12, 2011
High Platelet Count & Bone Marrow Biopsy - Update
I went to the doctors on Monday and the news was not great.
My platelet count has not come down at all with the Hydroxyurea (HU). Even though I have only been on the meds for about two weeks, the doctor said my platelet count should've come down, even if by the slightest margin. I went there hoping that we could reduce the meds (I was taking 1000mgs per day) but I left the appointment with the meds doubled to 2000mgs per day. I have been experiencing some side effects; dizziness and fatigue. The doctor also stressed that he would only have me on an aspirin regimen if it were not for the pins and needles sensation that I am still experiencing. The Neurologist said that the sensation is caused by my blood being extra thick like sludge through my veins due to the high platelets. Not everyone with high platelets will experience this thickening of their blood. This thickening of my blood is why the doctor put me on such a high dose of HU. Once my platelet counts come down, he is hoping that I can just be on an aspirin regimen and he will monitor me closely. I was glad that he has a plan to get me off the HU, because being on this drug for the next fifty years does not sound that great.
Also, I got the final results of my Bone Marrow Biopsy.
There was increased megakaryocytes, some appear normal in morphology, but some appear enlarged with hyperlobulated nuclei. Also, there are a few scattered blasts that appear variable in number but overall less than 5% of marrow cellularity. Iron stain shows no definite stainable iron. No ringed sideroblasts are seen. In the blood smear, there is marked thrombocytosis. The white blood cells are normal in number. The red blood cells show anisopoikilocytosis. Some of the platelets are large in size. The findings are not specific , but together with the peripheral marked thrombocytosis, raise the possibility of a chronic myeloproliferative disorder, however the mild reticulin fibrosis is somewhat unusual for ET and other myeloproliferative disorders cannot be excluded. Also, reactive marrow changes with marked reactive peripheral thrombocytosis are in the differential diagnosis. Iron deficiency study is recommended and repeat followup bone marrow biopsy for further evaluation is suggested. In English this means the following: I have Essential Thrombocytosis (ET) but because I have mild scarring on my bone marrow, they are not ruling out the possibility that I could have Myelofibrosis later in life. The doctor said that the scarring is not that bad and that I am fine for now. I will have a repeat biopsy in a year or so.
Myelofibrosis, (http://www.mayoclinic.com/health/myelofibrosis/DS00886) from what I have read, is a lot worse that ET. I have been so scared, confused, and unsure about the future. Some things I have read, from reliable on-line sources, have stated that the average survival of people with Myelofibrosis is about five years although many people survive for decades! Can you guess which part I focused on? All I could do last night was stare at my children, watch my husband while he slept and cry. If one word could sum up my feelings it would be: OVERWHELMED!
I go back to the doctors next week and every week after that for a very long time! I will keep everyone posted. I can't not explain it but this blog is truly an amazing outlet for me, thanks for reading.
I started this blog to post about my family and it has turned into a health blog. I will sprinkle in some family posts every now and then.
Every Day Is Truly A Gift!
- Shayna
I am not a medical professional, this is the story of my health journey. If you're experiencing symptoms or you're not feeling well, please contact a healthcare professional, ASAP.
My platelet count has not come down at all with the Hydroxyurea (HU). Even though I have only been on the meds for about two weeks, the doctor said my platelet count should've come down, even if by the slightest margin. I went there hoping that we could reduce the meds (I was taking 1000mgs per day) but I left the appointment with the meds doubled to 2000mgs per day. I have been experiencing some side effects; dizziness and fatigue. The doctor also stressed that he would only have me on an aspirin regimen if it were not for the pins and needles sensation that I am still experiencing. The Neurologist said that the sensation is caused by my blood being extra thick like sludge through my veins due to the high platelets. Not everyone with high platelets will experience this thickening of their blood. This thickening of my blood is why the doctor put me on such a high dose of HU. Once my platelet counts come down, he is hoping that I can just be on an aspirin regimen and he will monitor me closely. I was glad that he has a plan to get me off the HU, because being on this drug for the next fifty years does not sound that great.
Also, I got the final results of my Bone Marrow Biopsy.
There was increased megakaryocytes, some appear normal in morphology, but some appear enlarged with hyperlobulated nuclei. Also, there are a few scattered blasts that appear variable in number but overall less than 5% of marrow cellularity. Iron stain shows no definite stainable iron. No ringed sideroblasts are seen. In the blood smear, there is marked thrombocytosis. The white blood cells are normal in number. The red blood cells show anisopoikilocytosis. Some of the platelets are large in size. The findings are not specific , but together with the peripheral marked thrombocytosis, raise the possibility of a chronic myeloproliferative disorder, however the mild reticulin fibrosis is somewhat unusual for ET and other myeloproliferative disorders cannot be excluded. Also, reactive marrow changes with marked reactive peripheral thrombocytosis are in the differential diagnosis. Iron deficiency study is recommended and repeat followup bone marrow biopsy for further evaluation is suggested. In English this means the following: I have Essential Thrombocytosis (ET) but because I have mild scarring on my bone marrow, they are not ruling out the possibility that I could have Myelofibrosis later in life. The doctor said that the scarring is not that bad and that I am fine for now. I will have a repeat biopsy in a year or so.
Myelofibrosis, (http://www.mayoclinic.com/health/myelofibrosis/DS00886) from what I have read, is a lot worse that ET. I have been so scared, confused, and unsure about the future. Some things I have read, from reliable on-line sources, have stated that the average survival of people with Myelofibrosis is about five years although many people survive for decades! Can you guess which part I focused on? All I could do last night was stare at my children, watch my husband while he slept and cry. If one word could sum up my feelings it would be: OVERWHELMED!
I go back to the doctors next week and every week after that for a very long time! I will keep everyone posted. I can't not explain it but this blog is truly an amazing outlet for me, thanks for reading.
I started this blog to post about my family and it has turned into a health blog. I will sprinkle in some family posts every now and then.
Every Day Is Truly A Gift!
- Shayna
I am not a medical professional, this is the story of my health journey. If you're experiencing symptoms or you're not feeling well, please contact a healthcare professional, ASAP.
January 7, 2011
Hydroxyurea - Essential Thrombocythemia - Home From The Hospital
I went in to the ER on Sunday night and I got to go home Tuesday afternoon.
It turns out the pins and needles sensation that I was experiencing (which was only on the left side of my body) was due to four TIA (mini strokes) that I had due to my high platelet count (984,000)!
I was officially diagnosed with Essential Thrombocythemia (ET) - ( http://mpdfoundation.org/about_essential_thrombocythemia.asp) which is, a rare chronic blood disorder, that some still classify as a form of Cancer. There is no cure and it lasts for the rest of your life!
I was started on the chemo drug Hydroxyurea (HU) - (http://en.wikipedia.org/wiki/Hydroxycarbamide) 500mg twice a day to lower my platelet count, HUMEX because my body has very little Iron and 325mg of aspirin every day.
I have experienced some side effects from all the meds, such as: Fatigue, Dizziness, Loss of Appetite (this will be one way to lose some weight - not exactly the Weight Watchers Plan though), etc!
The HU chemo med says to avoid contact with anyone who may have any infections,etc. Well, all I can say is, I better have some really GREAT doctors because with five kids and four of them in school, someone is always bringing something home. Also, the drug says to handle the meds and the bottle them come in with extreme caution and to always wear gloves, etc. This got me thinking, if I cannot even touch this bottle without gloves, can anyone (i.e. my husband and kids) touch me?
I asked the pharmacist and she said I have to use extreme caution, she scared me to death. I thought, wow, can I give my kids kisses on their cheeks, kisses on their boo-boos? I called the doctors office right away and asked the nurse these questions. She responded with, "You have a appointment on Monday, go a head and ask the doctor then." I told her to "please ask him for me. The doctor said that the amount of HU that passes from me to my family, in those ways, is too small to affect them and that pharmacists often overstate to cover themselves.
Also, the doctors were very to the point about us never getting pregnant again, due to the HU medication. I already put this is in the back of my head because the doctor said if I was diagnosed with ET and had to be put on HU, I could not get pregnant. Putting something in the back of your mind and hearing it in a hospital bed, are two different things! My husband and I are blessed with five beautiful children and we had already made the choice to not have any more children but to have a disease/drug officially make that choice for you was mind blowing. It really was the first time that I thought to myself - I HAVE CANCER!
I sat there for a moment (okay for more than a moment) crying and thinking of all the things that would now be taking over my life and the life of my family: Dr. appts, medications, hospital visits, etc. The doctors say that ET is the best of all the blood disorders and that if you follow doctors orders and take the proper medications, you can live a full life and die of old age. I just can't wrap my head around the fact that my blood has a disease and (though it's rare) my bone marrow could stop working one day!
After I had my pity party, I thought to myself, "Okay Shayna, you have to get it together for the kids and your husband"! I am grateful that I was not diagnosed with Acute Leukemia, I was terrified of that possibility!
The one good thing that has come from all of this, is that it has put a lot of things into perspective!
It really made me realize what is IMPORTANT in my life -
My Health, My Family, and My Connection with G-D!
I can work out everything else in my life, I can fix it, I can make it better.
I have an appointment with my doctor on Monday and hopefully we can get the medications regulated so that I will experience less side effects. I will keep everyone posted.
- Shayna
It turns out the pins and needles sensation that I was experiencing (which was only on the left side of my body) was due to four TIA (mini strokes) that I had due to my high platelet count (984,000)!
I was officially diagnosed with Essential Thrombocythemia (ET) - ( http://mpdfoundation.org/about_essential_thrombocythemia.asp) which is, a rare chronic blood disorder, that some still classify as a form of Cancer. There is no cure and it lasts for the rest of your life!
I was started on the chemo drug Hydroxyurea (HU) - (http://en.wikipedia.org/wiki/Hydroxycarbamide) 500mg twice a day to lower my platelet count, HUMEX because my body has very little Iron and 325mg of aspirin every day.
I have experienced some side effects from all the meds, such as: Fatigue, Dizziness, Loss of Appetite (this will be one way to lose some weight - not exactly the Weight Watchers Plan though), etc!
The HU chemo med says to avoid contact with anyone who may have any infections,etc. Well, all I can say is, I better have some really GREAT doctors because with five kids and four of them in school, someone is always bringing something home. Also, the drug says to handle the meds and the bottle them come in with extreme caution and to always wear gloves, etc. This got me thinking, if I cannot even touch this bottle without gloves, can anyone (i.e. my husband and kids) touch me?
I asked the pharmacist and she said I have to use extreme caution, she scared me to death. I thought, wow, can I give my kids kisses on their cheeks, kisses on their boo-boos? I called the doctors office right away and asked the nurse these questions. She responded with, "You have a appointment on Monday, go a head and ask the doctor then." I told her to "please ask him for me. The doctor said that the amount of HU that passes from me to my family, in those ways, is too small to affect them and that pharmacists often overstate to cover themselves.
Also, the doctors were very to the point about us never getting pregnant again, due to the HU medication. I already put this is in the back of my head because the doctor said if I was diagnosed with ET and had to be put on HU, I could not get pregnant. Putting something in the back of your mind and hearing it in a hospital bed, are two different things! My husband and I are blessed with five beautiful children and we had already made the choice to not have any more children but to have a disease/drug officially make that choice for you was mind blowing. It really was the first time that I thought to myself - I HAVE CANCER!
I sat there for a moment (okay for more than a moment) crying and thinking of all the things that would now be taking over my life and the life of my family: Dr. appts, medications, hospital visits, etc. The doctors say that ET is the best of all the blood disorders and that if you follow doctors orders and take the proper medications, you can live a full life and die of old age. I just can't wrap my head around the fact that my blood has a disease and (though it's rare) my bone marrow could stop working one day!
After I had my pity party, I thought to myself, "Okay Shayna, you have to get it together for the kids and your husband"! I am grateful that I was not diagnosed with Acute Leukemia, I was terrified of that possibility!
The one good thing that has come from all of this, is that it has put a lot of things into perspective!
It really made me realize what is IMPORTANT in my life -
My Health, My Family, and My Connection with G-D!
I can work out everything else in my life, I can fix it, I can make it better.
I have an appointment with my doctor on Monday and hopefully we can get the medications regulated so that I will experience less side effects. I will keep everyone posted.
- Shayna
January 4, 2011
High Platelet Count - Diagnosis Essential Thrombocythemia
I was admitted to the hospital last night due to severe tingling/pins and needles all over the left side of my body, from my toes to the top of my head.
My platelet count was the highest it's been at 985,000.
The did an ultrasound of my liver and spleen last week along with a Bone Marrow Biopsy. The ultrasounds came back normal and they're waiting for one more part of my Bone Marrow test to come back. The Dr. did say that I do not have the JAK2 Gene or two other blood clots genes (that run in my family) they ran tests to look for in my system.
My MRI today in the hospital showed nonspecific foci of signal abnormality scattered throughout the sub cortical white matter. I may have to have another MRI done with contrast. This could explain the pins and needles sensation I have been experiencing. The Neurologist also said that having such a high platelet count could also cause issues to the nerves. My Hem/Onco Dr. said that I have a Myeloproliferative Disorder called
Essential Thrombocythemia ( you can go to this site to learn more about the disorder - http://www.mpdinfo.org/faq/faq_et.html/ )
and he has started me on a chemo drug called Hydroxyurea tonight. He gave me two 500mg pills, he will be in the hospital in the morning to check my blood work and see if they have helped my platelets go down. The Dr. says taking the Hydroxyurea usually works to bring down the platelets but I need to get blood work done once a week and be monitored very carefully in the beginning.
I am worried and scared but I'm hoping that my second MRI is okay and that I get to go home tomorrow because there truly is, No Place Like Home!
Disclaimer: This is my personal account of medical issues that I am dealing with in my life. If you suspect that you have something wrong with your health, you should see a health care professional, ASAP!- Shayna