As usual, I had platelets and red cells infusions; I don't even know how many transfusions I've had anymore.
Today, I also signed my consent papers to go through with the bone-marrow transplant. Dr. B walked us through the signing of consent papers, and the oncology nurse also discussed the expected side-effects of anti-thymocyte globulin (ATG), chemotherapy and full body radiation. It was a LOT to take and the information overwhelming.
The road looks tough. I think that reality is finally setting in, and there are times that fear takes over the better part of me. There's a lot of uncertainty, but life is full of uncertainties even to those who doesn't have to travel the same road I'm taking.
Just to give you an idea of BMT preparation, here's a list of what I went through for the past three days:
- lots of blood work
- bone marrow biopsy (don't like it)
- infusion of platelets and red cells
- scans (different types)
- pulmonary function test (this is my least favorite)
- echocardiogram (ultra-sound of the heart)
- EKG
- full body radiation simulation
- met my transplant doctor
- met the oncology nurse
Each day was long and exhausting.
Aside from all these medical tests, we also had to temporary house Dizzy, our cat, at a friend's house because pets are not allowed during the recovery period. We miss Dizzy so much :(.
The road to getting better will start on January 1st.
Friday, December 27, 2013
Thursday, December 19, 2013
BMT Prep Tests Begin
It's 3:22 AM and I can't sleep.
Yesterday, my coworkers and I had our holiday lunch, and it really bothered me because I had to say goodbye to my immediate boss; she's going on vacation and my last day of work would be on the 23rd. I think what really scares me is the uncertainty of what lies ahead. There's no way of knowing what will happen next. My hope is to get cured, pick up where I left off and get on with my life but sometimes the "what ifs" get the better part of me.
The holidays approaching makes everything harder too. It's so hard to get into the Christmas spirit with the twice a week transfusions. People keep saying that I should try to look at the positive side, but I kid you not, it's easier said than done. I sometimes wonder how a rare disease chooses its victims. There's that person who smoked since he was 17 and doesn't get sick a day in his life, maybe a cold here and there but that's it. Here I am, I don't smoke or drink, yet I am in the sickest phase in my life. It's really UNFAIR.
Today, I will be spending much of my day at the hospital. My husband and I will be attending a BMT class in the morning after my labs. Then there's the pulmonary function test and EKG in the afternoon. These are all test preparations for the BMT.
I am getting tired of these hospital trips.
It's now 3:52 AM and I'm still not sleepy.
Yesterday, my coworkers and I had our holiday lunch, and it really bothered me because I had to say goodbye to my immediate boss; she's going on vacation and my last day of work would be on the 23rd. I think what really scares me is the uncertainty of what lies ahead. There's no way of knowing what will happen next. My hope is to get cured, pick up where I left off and get on with my life but sometimes the "what ifs" get the better part of me.
The holidays approaching makes everything harder too. It's so hard to get into the Christmas spirit with the twice a week transfusions. People keep saying that I should try to look at the positive side, but I kid you not, it's easier said than done. I sometimes wonder how a rare disease chooses its victims. There's that person who smoked since he was 17 and doesn't get sick a day in his life, maybe a cold here and there but that's it. Here I am, I don't smoke or drink, yet I am in the sickest phase in my life. It's really UNFAIR.
Today, I will be spending much of my day at the hospital. My husband and I will be attending a BMT class in the morning after my labs. Then there's the pulmonary function test and EKG in the afternoon. These are all test preparations for the BMT.
I am getting tired of these hospital trips.
It's now 3:52 AM and I'm still not sleepy.
Monday, December 2, 2013
Thanksgiving Worth Remembering
My doctor gave me Friday, Nov. 29, as a day off from my regular twice-a-week transfusions. It seems that my body is now holding on to my platelets longer. I attribute that to the IVIG treatment I was given. Also, I no longer bruise easily which is a relief. I get so unhappy when my body is covered with bruises and the horrible looking petechiae.
Recently, I don't like how my photos look. I noticed that I look so old, tired and haggard.
On Wednesday, Nov. 27, I got an e-mail from Miss R, my BMT case manager, that a donor has confirmed. I cried. My coworkers were so elated and they hugged me. We cried.
I knew a week or two earlier that we had two possible 9/10 donors, but we were still waiting for a confirmation. I didn't want to either keep my hopes up or write about them on my blog, as I think it was too early. Also, a donor can choose not to donate at all.
With a hopeful heart, I packed my clothes as we, my parents, husband and I, were Atlantic City (AC) bound to spend Thanksgiving there. We thought we needed a break from our routine; We needed to get away from the things that makes us sad. During our drive to AC, Miss R sent me another e-mail confirming that we have a harvest date - meaning my donor has agreed to have her/his bone marrow harvested on a certain date.
I was astounded. It was hard to comprehend how my Thanksgiving is shaping or should I say becoming a true embodiment of gratitude: Gratitude to God; Gratitude to my donor's kindness; and, Gratitude to my supportive family and friends. I know I have a long way to go, but this is one of the biggest steps to getting a cure.
Truly, I am lost for words but deep inside, the truest form of "gratitude" beats within my heart. I have no words to fully describe it.
Yes, my donor is not a full match (10/10) and this will involve a bigger chance for graft-vs-host disease (GVHD). GVHD "is a complication that can occur after a stem cell or bone marrow transplant in which the newly transplanted donor cells attack the transplant recipient's body" (NIH). This is my biggest worry, but for now, I will dwell on the spirit of gratitude.
For truly, God has taken me this far and I know He will see me through recovery.
Hugs from chilly Washington D.C.
Recently, I don't like how my photos look. I noticed that I look so old, tired and haggard.
On Wednesday, Nov. 27, I got an e-mail from Miss R, my BMT case manager, that a donor has confirmed. I cried. My coworkers were so elated and they hugged me. We cried.
I knew a week or two earlier that we had two possible 9/10 donors, but we were still waiting for a confirmation. I didn't want to either keep my hopes up or write about them on my blog, as I think it was too early. Also, a donor can choose not to donate at all.
With a hopeful heart, I packed my clothes as we, my parents, husband and I, were Atlantic City (AC) bound to spend Thanksgiving there. We thought we needed a break from our routine; We needed to get away from the things that makes us sad. During our drive to AC, Miss R sent me another e-mail confirming that we have a harvest date - meaning my donor has agreed to have her/his bone marrow harvested on a certain date.
I was astounded. It was hard to comprehend how my Thanksgiving is shaping or should I say becoming a true embodiment of gratitude: Gratitude to God; Gratitude to my donor's kindness; and, Gratitude to my supportive family and friends. I know I have a long way to go, but this is one of the biggest steps to getting a cure.
Truly, I am lost for words but deep inside, the truest form of "gratitude" beats within my heart. I have no words to fully describe it.
Yes, my donor is not a full match (10/10) and this will involve a bigger chance for graft-vs-host disease (GVHD). GVHD "is a complication that can occur after a stem cell or bone marrow transplant in which the newly transplanted donor cells attack the transplant recipient's body" (NIH). This is my biggest worry, but for now, I will dwell on the spirit of gratitude.
For truly, God has taken me this far and I know He will see me through recovery.
Hugs from chilly Washington D.C.
Wednesday, November 20, 2013
IVIG Infusion
Yesterday was a long day!
It took almost three hours for my IVIG infusion. Then my doctor decided to give me two more bags of platelets. We arrived at the hospital at around 10 AM and we left at about 4:45 PM. I felt so tired and my head was woozy from the pre-medication they gave me. The IVIG is supposed to help my body keep the platelets longer. It seemed to work as my post platelet count after infusion went up to 67,000. Although it's a temporary fix, it's a bit of good news.
Dr. D came by to see me during the infusion. She's decided to move my transplant to January 2014 as there's a hold up in the donor search. I felt a bit sad that I'm not getting treatment the soonest, but I was also glad that I'll be spending Christmas at home with my family.
To whoever is reading this blog, please pray that my donor is found soon.
It took almost three hours for my IVIG infusion. Then my doctor decided to give me two more bags of platelets. We arrived at the hospital at around 10 AM and we left at about 4:45 PM. I felt so tired and my head was woozy from the pre-medication they gave me. The IVIG is supposed to help my body keep the platelets longer. It seemed to work as my post platelet count after infusion went up to 67,000. Although it's a temporary fix, it's a bit of good news.
To whoever is reading this blog, please pray that my donor is found soon.
Saturday, November 16, 2013
A Grateful Post
Today, a special gift from California arrived. The present neither came wrapped in glittery paper nor adorned with colorful ribbons. In fact, they came in simple, cold, translucent bags. Although simple and unadorned, these bags brought the best gift of all - LIFE.
I've been waiting for matched platelets for almost a week now. Since bleeding from my bone marrow biopsy procedure, my transplant team has been on the phone looking for matched platelets out-of-state. Surviving with just 1,000 platelets the past few days has been rough. I've been trapped at home and was not allowed to help in the kitchen especially in preparing and cooking food. My body is now covered in bruises and petechiae but I am hoping that some of these would clear up by tomorrow. The toughest of all is the psychological challenge of keeping my wits together in such a vulnerable and weak state.
For now, my transplant team has to keep finding me carefully matched platelets. My doctor also mentioned about putting me on Intravenous Immunoglobulin (IVIG) to keep/control my antibodies from attacking my own platelets and infused platelets.
It's another cold day in Maryland. Keep warm and always keep a grateful heart.
This post is for my California platelet donor, whoever you are, you have my lasting gratitude for responding to my need of platelets. Platelet donations are tougher compared to donating blood, and I admire you for going through it. Thank you so much for your gift of life.
A HEARTFELT THANK YOU TO ALL BLOOD AND BONE MARROW DONORS!
I've been waiting for matched platelets for almost a week now. Since bleeding from my bone marrow biopsy procedure, my transplant team has been on the phone looking for matched platelets out-of-state. Surviving with just 1,000 platelets the past few days has been rough. I've been trapped at home and was not allowed to help in the kitchen especially in preparing and cooking food. My body is now covered in bruises and petechiae but I am hoping that some of these would clear up by tomorrow. The toughest of all is the psychological challenge of keeping my wits together in such a vulnerable and weak state.
For now, my transplant team has to keep finding me carefully matched platelets. My doctor also mentioned about putting me on Intravenous Immunoglobulin (IVIG) to keep/control my antibodies from attacking my own platelets and infused platelets.
It's another cold day in Maryland. Keep warm and always keep a grateful heart.
Tuesday, November 12, 2013
1,000 Platelets
Can a person walk around with just 1,000 platelets? Yes, it is possible.
Since my body has rejected the last platelet transfusion I received on Friday, November 8, I have been functioning with just 1,000 platelets. Of course, I have to be very careful with everything I do; I'm not even allowed to drive. Apparently, my platelet match has to come all the way from California and won't arrive until Saturday, November 16. For now, 1,000 platelets is all I have.
My situation makes me feel nervous, but deep within there's an assuring feeling that I'll be okay. I am thankful for my blood and platelet donors. I am also grateful to my future bone marrow donor.
To those who are able, please take the time to donate blood or platelets. You might never receive a personal "thank you" from the person getting them, but I assure you that the blood/platelet recipient knows how much you go through to donate blood - most especially platelets. As a recipient of numerous transfusions now, my sincerest thank you to all blood and marrow donors. Without you, I won't be here.
BLOOD AND MARROW DONORS ROCK!!!
Writing with a grateful heart and blogging from the Infusion Room, Johns Hopkins.
It's a cold, cold day in Baltimore.
Since my body has rejected the last platelet transfusion I received on Friday, November 8, I have been functioning with just 1,000 platelets. Of course, I have to be very careful with everything I do; I'm not even allowed to drive. Apparently, my platelet match has to come all the way from California and won't arrive until Saturday, November 16. For now, 1,000 platelets is all I have.
My situation makes me feel nervous, but deep within there's an assuring feeling that I'll be okay. I am thankful for my blood and platelet donors. I am also grateful to my future bone marrow donor.
To those who are able, please take the time to donate blood or platelets. You might never receive a personal "thank you" from the person getting them, but I assure you that the blood/platelet recipient knows how much you go through to donate blood - most especially platelets. As a recipient of numerous transfusions now, my sincerest thank you to all blood and marrow donors. Without you, I won't be here.
BLOOD AND MARROW DONORS ROCK!!!
Writing with a grateful heart and blogging from the Infusion Room, Johns Hopkins.
It's a cold, cold day in Baltimore.
Saturday, November 9, 2013
It's All About Blood
Yesterday was supposed to be a quick visit to the hospital. I'd do my usual labs in the morning, platelet or red blood cells transfusions and a bone marrow biopsy. Everything went as planned except after the bone marrow biopsy.
The nurse discharged me after the biopsy and although I was still feeling woozy from the sedation, I happily hopped off my hospital bed to get going and get something to eat. Little did I know that as Kepi and I decided to get some hotdogs on the other side of road, I felt something damp on my back. I dismissed it and decided to cross the street anyway; I was really famished as I haven't had food since dinner the night before. As we got back to the hospital's lobby, the damp feeling on my back kept nagging me. I decided to take off my coat and have Kepi check my back. It was blood.
Kepi and I rushed back to the procedure room and found the nurse who discharged me. She immediately took me back to one of the rooms and started applying pressure on the biopsy site. I was scared but thank God the bleeding stopped. Who would have known that such occurrence came to be a blessing in disguise.
My transplant doctor arrived a few minutes later and informed me that my platelet transfusion did not bump up my count at all. She told me that my body is "choosy" and that my donor has to be screened and matched thoroughly in order to find that my donor's platelets matches my system. If that even makes sense; I was blown away. Anyway, I spent the night at the hospital for overnight observation. I didn't sleep that well, as the nurses kept checking on me every after four hours.
I am now home. I have to be extra careful as I am walking with just 1,000 platelets and I have a bit of bruising all over my body. I'd have to wait until Tuesday to get another platelet transfusion. For now, I have a pill that I can take in case I have a bleeding problem.
It is a wonderful feeling to know that I am still here. By the way, the stitches came off from my Hickman Port site; it is healing quite well.
Subscribe to:
Posts (Atom)