Journal entry by Anna Judd —
Dear friends, hello!
I am very sorry for a long period of not writing an update. I know that you worry about me and want to know about my progress. Sorry again!
Even though I had no energy to write, I have been remembering you and praying for all of you daily. I am truly grateful for all the long term support that I am getting from you and I pray to God to bless you for your kindness and care.
My last journal entry was done on July 25th, almost two weeks after my transplant date. Now it has been two and a half months since July 17, when I received a generous selfless gift of donor stem cells transplant. And I must say, it had been very hard last two and a half months.
It had been like swimming in rough waters, when you start strong and determined to reach your destination and, with the passing of time, you get weaker and weaker, while the waters are still rough and you still don't see the other shore.
That is where your inner strength, your patience, and, most of all, your faith are really tested. That is where, at some point, you clearly see that there is no way you can rely on your own strengh. You cannot because all of us, humans, are limited in our physical abilities to endure hardships, and increasing weakness, and continue to face debilitating circumstances. At some point, we just run out of steam... and then what?
Then you either give up and get into a despair, which I have seen and I have heard about a lot from my nurses, or you let go of your diminishing physical efforts and focus on your faith. You still have to keep swimming and still do your very best.
However, at that point, your realize that what carries you through this last stretch is not so much your persistence, even though it is also important, but mostly the depth of your own faith and all the prayers that your wonderful friends are saying for you.
I had been super-tired, day after day, week after week... I had no steam left to write to you, and in the same time, I was aware of your positive thoughts and prayers, and I felt your support, which touched me deeply.
Thank you. Thank you. Thank you.
It has been more than five months since I have been at home and had a chance to see most of you. More than five months...
Thank you very much for remembering about me and supporting me on my very lengthy and treacherous journey. I appreciate it and don't take it for granted.
It is interesting to note that my doctor and most of my nurses were telling me that I was "doing ten times better" than most of their transplant patients. When I heard that, I always felt so sorry about other patients: if I felt so out of it and barely holding, how those other patients must have felt.
Recovery from the transplant procedure and the "obliteration" chemotherapy, given right before the transplant, is like swimming in very rough waters, for a very long time. Not everyone can make it.
The first big challenge is so called mucositis. This happens approximately a week after the transplant. It is a delayed side effect of the super-strong chemotherapy. All the mucosal lining of the stomach, esophagus, throat, and mouth, all of it, gets burned, and eating and drinking becomes almost impossible.
Drinking a sip of water causes terrible pain...even swallowing your own saliva is unbearably painful.
Patients go through this mucositis stage for several weeks and, naturally, lose lots of weight and strength. Most patients live these seemingly endless two-three weeks on strong narcotic drugs.
I happened to have adverse reaction to the painkilling narcotic drugs, so instead, I lived on prayers and patience. Each day I hoped that it was the last day of the intense mucositis, but it was very persistent and continued well beyond of what my doctor predicted. After awhile, it was hard to believe that I would ever be able to eat again.
Patients suffer a lot after a transplant, and there was a person in the room next to mine who screamed so loudly, because of all the pain, that it was almost impossible to sleep. I felt so sorry for him!
When I was finally able to start eating liquid food, I realized that I completely lost my appetite and developed continuous nausea... therefore, eating anything remained a problem.
I saw my weight going down and down. I tried my best to start eating but the most I could handle was a couple of spoons of oatmeal in the morning and a protein shake in the evening. My body had trouble digesting anything, and the nurses were assuring me that it was normal after the transplant.
I was released from the hospital on August 14, as soon as I was able to swallow a bunch of pills instead of receiving all the medicine through an IV. My transplant coordinator told me that the fact that I am allowed to leave the hospital did not mean that I recovered. Absolutely not. It meant that it became feasible to disconnect me from the multiple IV lines, and send me to convalescence at home, and that my recovery was just beginning.
She also reminded me that I had to have a caregiver 24/7 and I was not allowed to drive myself. She also reminded me that lots of things could go wrong, so my caregiver was allowed to call her 24/7, to describe the problem. According to the severity of the problem, a doctor would decide to hospitalize the patient right away or see him tomorrow morning at a daily outpatient checkup.
Soon I realized that was a miracle when everything worked well after the transplant, and most patients had to go through the rough waters for extended time.
The full recovery takes two years. The partial recovery happens in about one year, and the initial recovery is expected to be in 100 days after the date of the transplant.
This first 100 days are the most difficult and the most dangerous, that is why all transplant patients are supposed to stay in close proximity to the Bone Marrow Transplant Unit of the hospital, and come to regular checkups.
For me, it ended up being daily appointments at the outpatient Infusion Center for 5 weeks straight. Every single day I showed up at 9 am to have all kinds of blood tests done and medicine administered by IV to fight the particular virus, that flaired up a couple of days after I left the hospital.
It is called a Citomegalovirus, and most adults have it in a dormant form. For a person with normally functioning immune system, it is no problem. For a patient after a transplant, it is a dangerous situation and requires immediate treatment.
For five long weeks, I received strong antiviral medicine through an IV, an a daily basis. I hoped that it would take care of he virus, but it continued to go up on my weekly tests, challenging me to be more patient and to pray more. At some point it got scary. My doctor looked pretty concerned. The antiviral drug was suppressing my newly populated bone marrow, as a side effect of treating the virus, and I saw my wonderful strong donor cell count going down every day.
I started to worry when my white blood cells count went really down, while that stubborn virus was not budging. In deep concern, I asked my doctor what can I do to preserve my white blood cells from going to total zero. He looked straight in my eyes and seriously said: "There is nothing you can do about it." I considered it for a second and told my doctor: "I can pray." He shrugged his shoulders.
I was determined to protect my newly found donor's white blood cells, that were vitally important for my recovery. And I really do believe in prayer! I asked my mom to add more prayers for my health to her daily routine, I asked my son to double his prayers, and my dear husband increased his prayers for me. Also, my sister was asking everyone to pray for me in Russia, and, of course, I got deeper and more focused in my own prayer life.
Each time a nurse would bring a pouch with that strong antiviral medicine, that was suppressing my white blood cells, and hang it on my IV stand, I would bless it and pray that it would be very strong and powerful against the virus and yet very gentle on my white blood cells.
The nurses saw my blessings and I shared with them my prayers, and many of them started to pray with me. Some also told me that they would pray for me at home.
For the next three weeks of daily antiviral medicine dripping, my white blood cells held their ground: they did not go up much but they stopped falling down. They stayed strong on the same level, and my doctor was really pleased with the situation. I kept telling him: "See, prayers do work."
My precious white blood cells continued to stay strong until the virus was finally gone, a week ago. Thanks God for that!
With the virus undetectable and the antiviral medicine discontinued, I am now allowed to come to the Infusion center checkups only twice a week, instead of daily. Thanks God for that!
I am still weak and need to sleep a lot, still having trouble to digest most foods, but I am definitely healing. Thanks God for that too!
And many, many thanks to all of you, my cherished friends, for your continued support. As you can see from this long, really overdue update, I can still use your kind positive thoughts and ongoing prayers.
May you and your families be richly blessed for being my wonderful faithful support team!
I love you all!
in gratitude,
Anna.
I am very sorry for a long period of not writing an update. I know that you worry about me and want to know about my progress. Sorry again!
Even though I had no energy to write, I have been remembering you and praying for all of you daily. I am truly grateful for all the long term support that I am getting from you and I pray to God to bless you for your kindness and care.
My last journal entry was done on July 25th, almost two weeks after my transplant date. Now it has been two and a half months since July 17, when I received a generous selfless gift of donor stem cells transplant. And I must say, it had been very hard last two and a half months.
It had been like swimming in rough waters, when you start strong and determined to reach your destination and, with the passing of time, you get weaker and weaker, while the waters are still rough and you still don't see the other shore.
That is where your inner strength, your patience, and, most of all, your faith are really tested. That is where, at some point, you clearly see that there is no way you can rely on your own strengh. You cannot because all of us, humans, are limited in our physical abilities to endure hardships, and increasing weakness, and continue to face debilitating circumstances. At some point, we just run out of steam... and then what?
Then you either give up and get into a despair, which I have seen and I have heard about a lot from my nurses, or you let go of your diminishing physical efforts and focus on your faith. You still have to keep swimming and still do your very best.
However, at that point, your realize that what carries you through this last stretch is not so much your persistence, even though it is also important, but mostly the depth of your own faith and all the prayers that your wonderful friends are saying for you.
I had been super-tired, day after day, week after week... I had no steam left to write to you, and in the same time, I was aware of your positive thoughts and prayers, and I felt your support, which touched me deeply.
Thank you. Thank you. Thank you.
It has been more than five months since I have been at home and had a chance to see most of you. More than five months...
Thank you very much for remembering about me and supporting me on my very lengthy and treacherous journey. I appreciate it and don't take it for granted.
It is interesting to note that my doctor and most of my nurses were telling me that I was "doing ten times better" than most of their transplant patients. When I heard that, I always felt so sorry about other patients: if I felt so out of it and barely holding, how those other patients must have felt.
Recovery from the transplant procedure and the "obliteration" chemotherapy, given right before the transplant, is like swimming in very rough waters, for a very long time. Not everyone can make it.
The first big challenge is so called mucositis. This happens approximately a week after the transplant. It is a delayed side effect of the super-strong chemotherapy. All the mucosal lining of the stomach, esophagus, throat, and mouth, all of it, gets burned, and eating and drinking becomes almost impossible.
Drinking a sip of water causes terrible pain...even swallowing your own saliva is unbearably painful.
Patients go through this mucositis stage for several weeks and, naturally, lose lots of weight and strength. Most patients live these seemingly endless two-three weeks on strong narcotic drugs.
I happened to have adverse reaction to the painkilling narcotic drugs, so instead, I lived on prayers and patience. Each day I hoped that it was the last day of the intense mucositis, but it was very persistent and continued well beyond of what my doctor predicted. After awhile, it was hard to believe that I would ever be able to eat again.
Patients suffer a lot after a transplant, and there was a person in the room next to mine who screamed so loudly, because of all the pain, that it was almost impossible to sleep. I felt so sorry for him!
When I was finally able to start eating liquid food, I realized that I completely lost my appetite and developed continuous nausea... therefore, eating anything remained a problem.
I saw my weight going down and down. I tried my best to start eating but the most I could handle was a couple of spoons of oatmeal in the morning and a protein shake in the evening. My body had trouble digesting anything, and the nurses were assuring me that it was normal after the transplant.
I was released from the hospital on August 14, as soon as I was able to swallow a bunch of pills instead of receiving all the medicine through an IV. My transplant coordinator told me that the fact that I am allowed to leave the hospital did not mean that I recovered. Absolutely not. It meant that it became feasible to disconnect me from the multiple IV lines, and send me to convalescence at home, and that my recovery was just beginning.
She also reminded me that I had to have a caregiver 24/7 and I was not allowed to drive myself. She also reminded me that lots of things could go wrong, so my caregiver was allowed to call her 24/7, to describe the problem. According to the severity of the problem, a doctor would decide to hospitalize the patient right away or see him tomorrow morning at a daily outpatient checkup.
Soon I realized that was a miracle when everything worked well after the transplant, and most patients had to go through the rough waters for extended time.
The full recovery takes two years. The partial recovery happens in about one year, and the initial recovery is expected to be in 100 days after the date of the transplant.
This first 100 days are the most difficult and the most dangerous, that is why all transplant patients are supposed to stay in close proximity to the Bone Marrow Transplant Unit of the hospital, and come to regular checkups.
For me, it ended up being daily appointments at the outpatient Infusion Center for 5 weeks straight. Every single day I showed up at 9 am to have all kinds of blood tests done and medicine administered by IV to fight the particular virus, that flaired up a couple of days after I left the hospital.
It is called a Citomegalovirus, and most adults have it in a dormant form. For a person with normally functioning immune system, it is no problem. For a patient after a transplant, it is a dangerous situation and requires immediate treatment.
For five long weeks, I received strong antiviral medicine through an IV, an a daily basis. I hoped that it would take care of he virus, but it continued to go up on my weekly tests, challenging me to be more patient and to pray more. At some point it got scary. My doctor looked pretty concerned. The antiviral drug was suppressing my newly populated bone marrow, as a side effect of treating the virus, and I saw my wonderful strong donor cell count going down every day.
I started to worry when my white blood cells count went really down, while that stubborn virus was not budging. In deep concern, I asked my doctor what can I do to preserve my white blood cells from going to total zero. He looked straight in my eyes and seriously said: "There is nothing you can do about it." I considered it for a second and told my doctor: "I can pray." He shrugged his shoulders.
I was determined to protect my newly found donor's white blood cells, that were vitally important for my recovery. And I really do believe in prayer! I asked my mom to add more prayers for my health to her daily routine, I asked my son to double his prayers, and my dear husband increased his prayers for me. Also, my sister was asking everyone to pray for me in Russia, and, of course, I got deeper and more focused in my own prayer life.
Each time a nurse would bring a pouch with that strong antiviral medicine, that was suppressing my white blood cells, and hang it on my IV stand, I would bless it and pray that it would be very strong and powerful against the virus and yet very gentle on my white blood cells.
The nurses saw my blessings and I shared with them my prayers, and many of them started to pray with me. Some also told me that they would pray for me at home.
For the next three weeks of daily antiviral medicine dripping, my white blood cells held their ground: they did not go up much but they stopped falling down. They stayed strong on the same level, and my doctor was really pleased with the situation. I kept telling him: "See, prayers do work."
My precious white blood cells continued to stay strong until the virus was finally gone, a week ago. Thanks God for that!
With the virus undetectable and the antiviral medicine discontinued, I am now allowed to come to the Infusion center checkups only twice a week, instead of daily. Thanks God for that!
I am still weak and need to sleep a lot, still having trouble to digest most foods, but I am definitely healing. Thanks God for that too!
And many, many thanks to all of you, my cherished friends, for your continued support. As you can see from this long, really overdue update, I can still use your kind positive thoughts and ongoing prayers.
May you and your families be richly blessed for being my wonderful faithful support team!
I love you all!
in gratitude,
Anna.
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