I read another blog this week by a woman about my age who also has AML. She's currently undergoing the same experimental treatment as me (decitabine) and expressed that if this doesn't work, it's the end of the road for her. I understand the emotional rollercoaster she is on. Fighting to live. The good days for us are the worst days for the rest of the world...our feelings become very relative. My definition of "good" has come to mean an entirely different thing than it did a year ago.
That being said, things are going as well as can be expected right now. Chemo week came and went without too many horrible side effects -- just the standard complaints. I've been able to keep my weight up for the most part, and finally exceeded my starting weight from a year ago. It's still too early to tell, really, if the decitabine is working, though it appears that the disease isn't progressing at a rapid pace. I'm still here -- that's proof enough, I suppose. I still require regular transfusions. Red Cross commercials make me cry. I don't think people really realize the gift they are giving when they donate blood product. It is truly a gift of life. My counts are low this weekend and I am fighting the weariness, shortness of breath, aching muscles, and all that goes with it. It has me actually looking forward to spending Monday getting transfusions.
I may not update for a little while, unless there is something important to note. I'll see my oncologist on May 2nd, do a week of chemo starting May 7th, and have another DLI on May 18th. I'll be getting a much larger "dose" of cells this time, so I would appreciate prayer that it is effective without killing me. Trust me, we transplantees view GVHD with much fear and trembling.
As always, thank you so much for your prayers, love and support.
Saturday, April 21, 2007
Thursday, April 12, 2007
Quick Update
Only one more day of chemo! I'm excited...going to the hospital every day gets old, but again, I'm thankful that I'm not inpatient. So far I haven't noticed many side effects. The skin around my bandage seems to be healing nicely. Thanks for all the prayers! We had a doctor check it yesterday while I was getting chemo, just to be on the safe side. I may switch over to Hypafix (spelling?) tomorrow -- one of my nurses calls it "old lady tape." It's a lot easier on the skin, though I tend to avoid it because it's not waterproof and makes showers difficult. Several have suggested using the tegaderm over top, so I think I'll give that a try. I never really thought I had sensitive skin but tape has often been an issue over the past year.
My platelets seem to be holding a little bit better this time. They were at 21 today and the fellow on call decided to let me go through the weekend, if possible. She told me what to watch for if they get too low and to call SEU at the main hospital if necessary over the weekend. If they get really low there is some risk of stroke or hemorrhage, but that is supposed to be rare. I forgot to ask for a copy of my labs today so I'm not sure what my ANC is like. I just continue to be cautious and always mask up when out at the hospital.
We'll be meeting with my transplant doctor at Barnes on Tuesday. He wants to make sure I don't have any GVHD that I'm not aware of. I spoke with him on the phone the other day and he has decided to wait on the next DLI. I'll find out more on Tuesday, but for now it looks like May or June. He said in his opinion the disease is progressing slowly, if at all. (Blasts were at 13% on Monday, for those in the know.) I was quite pleased to hear that, especially from the same man who gave me a two month prognosis, but he hasn't been following my labs these past few months, so I prefer to have him repeat that after I show him some records on Tuesday.
Thanks so much for all of your prayers. Have a good weekend!
My platelets seem to be holding a little bit better this time. They were at 21 today and the fellow on call decided to let me go through the weekend, if possible. She told me what to watch for if they get too low and to call SEU at the main hospital if necessary over the weekend. If they get really low there is some risk of stroke or hemorrhage, but that is supposed to be rare. I forgot to ask for a copy of my labs today so I'm not sure what my ANC is like. I just continue to be cautious and always mask up when out at the hospital.
We'll be meeting with my transplant doctor at Barnes on Tuesday. He wants to make sure I don't have any GVHD that I'm not aware of. I spoke with him on the phone the other day and he has decided to wait on the next DLI. I'll find out more on Tuesday, but for now it looks like May or June. He said in his opinion the disease is progressing slowly, if at all. (Blasts were at 13% on Monday, for those in the know.) I was quite pleased to hear that, especially from the same man who gave me a two month prognosis, but he hasn't been following my labs these past few months, so I prefer to have him repeat that after I show him some records on Tuesday.
Thanks so much for all of your prayers. Have a good weekend!
Monday, April 09, 2007
Chemo Round Two
I'm writing from Ellis Fischel once again. We've been here since a little before 8 a.m. I'm about halfway done with today's dose of Decitabine, and then I'll start a bag of platelets. They were down to 8 today and as a result I'm covered with petechiae rash. I'm hoping they'll hold better this time. I read over the weekend that it's possible for the body to eventually build up a resistance to platelet infusions and quit responding. For that reason, they don't give any more than necessary.
Prayer requests right now are for mild side effects from chemo. I'm getting Zofran again as a premed, and using another anti-emetic at home. Last time nausea seemed to be the worst side effect, and for the most part I could manage it with the drugs. The other major side effect for me was a constant tense, jittery feeling. I'm currently undergoing hormone therapy to deal with some disease side effects, so it's a bit of an emotional rollercoaster. And of course, low counts. My ANC was up to 1200 today. I was very pleased with that. Still only about half of what a normal person would have on the low end. Also, I've developed an area of broken skin around the bandage on my Hickman catheter. The bandage is called tagaderm, and it's similar to a sticky-sided saran wrap. Sometimes I react to it, and I would appreciate prayer that it would heal quickly and not get infected, as it's only about 1" from the actual catheter site. If the site becomes infected they'll have to pull the line and I'll need outpatient surgery to place another one. I don't even want to think about the possibility. Healing is a slow process when counts are low -- in the meantime I'm keeping Neosporin on it to help ward off an infection.
I hope everyone had a blessed Resurrection Sunday. In light of everything in my life this year, I am especially thankful that Christ has risen, and death has been swallowed up in victory.
Prayer requests right now are for mild side effects from chemo. I'm getting Zofran again as a premed, and using another anti-emetic at home. Last time nausea seemed to be the worst side effect, and for the most part I could manage it with the drugs. The other major side effect for me was a constant tense, jittery feeling. I'm currently undergoing hormone therapy to deal with some disease side effects, so it's a bit of an emotional rollercoaster. And of course, low counts. My ANC was up to 1200 today. I was very pleased with that. Still only about half of what a normal person would have on the low end. Also, I've developed an area of broken skin around the bandage on my Hickman catheter. The bandage is called tagaderm, and it's similar to a sticky-sided saran wrap. Sometimes I react to it, and I would appreciate prayer that it would heal quickly and not get infected, as it's only about 1" from the actual catheter site. If the site becomes infected they'll have to pull the line and I'll need outpatient surgery to place another one. I don't even want to think about the possibility. Healing is a slow process when counts are low -- in the meantime I'm keeping Neosporin on it to help ward off an infection.
I hope everyone had a blessed Resurrection Sunday. In light of everything in my life this year, I am especially thankful that Christ has risen, and death has been swallowed up in victory.
Friday, April 06, 2007
Information and some answers
Over the past months I've received a lot of e-mail. It varies from "I'm praying for you" to detailed advice. I haven't taken the time to reply to all of them, especially the more detailed ones which in turn require a detailed response. It's easy to get tired of explaining things and justifying to family and friends decisions we have made, to be perfectly honest, even though I know the advice and questions come out of a sincere desire to help. So, I've decided to do a "questions and answers" post to address the questions we most commonly receive.
First, I want to explain very basically what AML is. There will be approximately 12,000 new cases in the US this year. Of those, 90% will affect people over 65 years of age. 90% will die. There is debate among the leukemia community as to whether these statistics are accurate based on the fact that most AML deaths are recorded under the secondary cause of death, such as pneumonia or influenza. A family member of the deceased needs to stay on top of the doctor in order to have the cause of death recorded as AML.
AML is a result of acquired genetic damage to the DNA of developing cells in the bone marrow. In my case, they were unable to find any genetic changes, and I haven't been exposed to things like benzene or radiation and never smoked, so I was told it just happened one day like being hit by lightning. (Studies now show that it only takes the carcinogens in the smoke of one cigarette to cause irreversible genetic damage, so I certainly don't rule out second hand smoke as a possibility. Unfortunately none of us have managed to avoid cigarette smoke all of our lives.) We feel there is still a genetic marker somewhere, but it has yet to be discovered. One of the chromosomal changes, dubbed Philadelphia after its place of discovery, was just found in the past ten years. AML is also not a result of a compromised immune system or a failure to think positively.
The effects of AML are an uncontrolled, exaggerated growth of cells called leukemic blasts which fail to function as normal blood cells. My oncologist refers to them as juvenile delinquents. The other major effect is a blockage of the normal cells which in turn causes me to be anemic, have low platelets and become neutropenic. Lots of people have implied that my struggle with low counts and constant need for blood and platelets is because we've chosen to do chemo, not realizing that my disease alone does all the damage of chemo. The difference with chemo is that something is attacking the blasts along with all the other cells.*
The overwhelming advice we are given is to eat only organic or raw foods. I recognize that with most diseases, this is probably a good approach to use along with treatment. And certainly eating healthy is something I've focused on, but an organic or raw food diet poses significant risk to AML patients because our immune system is compromised from the disease. It's impossible to wash all the bacteria from raw foods (such as E. Coli or more common strains), and while most people can handle it, AML patients cannot. It's not just the doctors being "anti natural" -- it's a fact that I have to deal with everyday. I avoid uncooked foods just like I avoid public places. Unfortunately it goes with the diagnosis. Through study we have also learned that I need to avoid an iron-rich diet which has me avoiding meat along with a lot of green vegetables and some fruits. It is our understanding that the leukemic blasts "feed" on iron and I honestly feel my disease is progressing at a slower rate with these diet changes, though only time will tell for sure.
The one aspect of the disease that I hate the most is the compromised immune system. I have missed anniversary parties, weddings and funerals this past year, always weighing the benefit against the risk of death. At this time it is paramount that I stay healthy. AML patients die of secondary diseases as a result of low blood counts. If I stay healthy, I stay alive, and I have time to fight.
I have become increasingly aware of the danger of giving medical advice to others. (As opposed to making someone aware of a possible treatment so they can research how it may apply to their illness.) Even within AML there are subtypes and chromosomal involvement or deletion which cause treatment to vary greatly. What is good for one patient may kill another, and certainly leukemia often gets lumped in with other types of cancer and recommendations are based upon a friend or family member who once had breast or prostrate cancer, the two most common types. It's frustrating, and I often find myself repeating "they're not the same!!" Unfortunately cancer is a very wide category, and each case is unique. To that end, I do not want anything I have written or any treatment options I have mentioned on this blog to ever be construed as medical advice for another patient. My advice has been and continues to be -- learn about your disease. Study it. Learn to communicate with your doctors and get multiple opinions. Try to have a patient advocate. I don't have one professionally, though I feel my husband functions as such, as have other family members when needed. We've consulted with multiple hospitals, cancer patient advocates, oncologists, hematologists, immunologists, naturopaths and a psychiatrist. All have helped to give us information on different aspects of this disease, and I find the knowledge helps so much in our own personal fight.
Again, thank you for the love and care that each e-mail expresses, and I hope this has helped to clarify AML and the treatment options we are pursuing. We have been very grateful for everyone who has taken the time to make us aware of possible treatments, and it is only my intention to "get a reply" to everyone without taking a lot of time away from my family right now.
*I obtained most of this information from the following website:
http://www.leukemia-lymphoma.org/all_page?item_id=8459
First, I want to explain very basically what AML is. There will be approximately 12,000 new cases in the US this year. Of those, 90% will affect people over 65 years of age. 90% will die. There is debate among the leukemia community as to whether these statistics are accurate based on the fact that most AML deaths are recorded under the secondary cause of death, such as pneumonia or influenza. A family member of the deceased needs to stay on top of the doctor in order to have the cause of death recorded as AML.
AML is a result of acquired genetic damage to the DNA of developing cells in the bone marrow. In my case, they were unable to find any genetic changes, and I haven't been exposed to things like benzene or radiation and never smoked, so I was told it just happened one day like being hit by lightning. (Studies now show that it only takes the carcinogens in the smoke of one cigarette to cause irreversible genetic damage, so I certainly don't rule out second hand smoke as a possibility. Unfortunately none of us have managed to avoid cigarette smoke all of our lives.) We feel there is still a genetic marker somewhere, but it has yet to be discovered. One of the chromosomal changes, dubbed Philadelphia after its place of discovery, was just found in the past ten years. AML is also not a result of a compromised immune system or a failure to think positively.
The effects of AML are an uncontrolled, exaggerated growth of cells called leukemic blasts which fail to function as normal blood cells. My oncologist refers to them as juvenile delinquents. The other major effect is a blockage of the normal cells which in turn causes me to be anemic, have low platelets and become neutropenic. Lots of people have implied that my struggle with low counts and constant need for blood and platelets is because we've chosen to do chemo, not realizing that my disease alone does all the damage of chemo. The difference with chemo is that something is attacking the blasts along with all the other cells.*
The overwhelming advice we are given is to eat only organic or raw foods. I recognize that with most diseases, this is probably a good approach to use along with treatment. And certainly eating healthy is something I've focused on, but an organic or raw food diet poses significant risk to AML patients because our immune system is compromised from the disease. It's impossible to wash all the bacteria from raw foods (such as E. Coli or more common strains), and while most people can handle it, AML patients cannot. It's not just the doctors being "anti natural" -- it's a fact that I have to deal with everyday. I avoid uncooked foods just like I avoid public places. Unfortunately it goes with the diagnosis. Through study we have also learned that I need to avoid an iron-rich diet which has me avoiding meat along with a lot of green vegetables and some fruits. It is our understanding that the leukemic blasts "feed" on iron and I honestly feel my disease is progressing at a slower rate with these diet changes, though only time will tell for sure.
The one aspect of the disease that I hate the most is the compromised immune system. I have missed anniversary parties, weddings and funerals this past year, always weighing the benefit against the risk of death. At this time it is paramount that I stay healthy. AML patients die of secondary diseases as a result of low blood counts. If I stay healthy, I stay alive, and I have time to fight.
I have become increasingly aware of the danger of giving medical advice to others. (As opposed to making someone aware of a possible treatment so they can research how it may apply to their illness.) Even within AML there are subtypes and chromosomal involvement or deletion which cause treatment to vary greatly. What is good for one patient may kill another, and certainly leukemia often gets lumped in with other types of cancer and recommendations are based upon a friend or family member who once had breast or prostrate cancer, the two most common types. It's frustrating, and I often find myself repeating "they're not the same!!" Unfortunately cancer is a very wide category, and each case is unique. To that end, I do not want anything I have written or any treatment options I have mentioned on this blog to ever be construed as medical advice for another patient. My advice has been and continues to be -- learn about your disease. Study it. Learn to communicate with your doctors and get multiple opinions. Try to have a patient advocate. I don't have one professionally, though I feel my husband functions as such, as have other family members when needed. We've consulted with multiple hospitals, cancer patient advocates, oncologists, hematologists, immunologists, naturopaths and a psychiatrist. All have helped to give us information on different aspects of this disease, and I find the knowledge helps so much in our own personal fight.
Again, thank you for the love and care that each e-mail expresses, and I hope this has helped to clarify AML and the treatment options we are pursuing. We have been very grateful for everyone who has taken the time to make us aware of possible treatments, and it is only my intention to "get a reply" to everyone without taking a lot of time away from my family right now.
*I obtained most of this information from the following website:
http://www.leukemia-lymphoma.org/all_page?item_id=8459
Friday Update
I'm sitting in a bed at Ellis Fischel, about halfway through my second unit of red cells for the day. I've been here since 8 a.m., and it's going on 4 p.m. Transfusions have become a sort of part time job. So far I've needed a blood transfusion about every other week. My platelets haven't been holding well -- I had a unit last Friday, again on Wednesday, and they're in the 30s again today, so I'm sure I'll need more on Monday. I get them anytime the count drops below 20 -- an average person would want to be 150 on the low end, just to give an idea. Anything below 50 is dangerous. A few weeks ago I hit my record low of 7. I don't want to get back there.
I met with Dr. Perry on Wednesday and we will continue with chemo next week as planned. Just like last time -- five days and then off for three weeks. At this point I haven't shown any significant GVHD so I expect to have another DLI 10-14 days after this round of chemo. I don't really have much to say as far as disease progression goes. The chemo drug we are using causes the counts to jump all over the place so there's no real way to tell what's going on at this point. I expect to have a bone marrow biopsy/aspiration after the three month point, sometime in May. Somedays I feel really good, and other days I'm wiped out. My husband compares it to pregnancy when people ask how I feel. I'm tired, nauseous and my iron is constantly low.
I continue to be grateful for each healthy day (outside of GVHD). We have focused on supplements that we feel aid my immune system and I've been thrilled to make it through the past three weeks of low counts without getting sick. I am continually reminded of the risks -- so many AML patients end up dying from something like influenza or pneumonia. If I can stay healthy, I have time to fight this. My absolute neutrophil count (ANC) had been sitting at about 100 but was starting to climb as of Tuesday. They like to see it at 1000 before starting another round of chemo.
As always, thanks for your prayers and for the many ways you bless us.
I met with Dr. Perry on Wednesday and we will continue with chemo next week as planned. Just like last time -- five days and then off for three weeks. At this point I haven't shown any significant GVHD so I expect to have another DLI 10-14 days after this round of chemo. I don't really have much to say as far as disease progression goes. The chemo drug we are using causes the counts to jump all over the place so there's no real way to tell what's going on at this point. I expect to have a bone marrow biopsy/aspiration after the three month point, sometime in May. Somedays I feel really good, and other days I'm wiped out. My husband compares it to pregnancy when people ask how I feel. I'm tired, nauseous and my iron is constantly low.
I continue to be grateful for each healthy day (outside of GVHD). We have focused on supplements that we feel aid my immune system and I've been thrilled to make it through the past three weeks of low counts without getting sick. I am continually reminded of the risks -- so many AML patients end up dying from something like influenza or pneumonia. If I can stay healthy, I have time to fight this. My absolute neutrophil count (ANC) had been sitting at about 100 but was starting to climb as of Tuesday. They like to see it at 1000 before starting another round of chemo.
As always, thanks for your prayers and for the many ways you bless us.
Saturday, March 31, 2007
DLI
Thanks to everyone for your prayers yesterday. We had an eventful day, though most of the action involved driving to and from the hospital and not the actual procedure. Our tire went flat on the way up, but seemed to be o.k. after a stop at the gas station for air. It made it through the day and all the way home (120+ miles), though upon further inspection today we discovered it to be completely blown and shredded. We had a very rainy drive up, and at one point on the interstate the vehicle in front of us lost control and we immediately followed. Brandon was able to keep control of the vehicle for the most part and thankfully there were no cars in the lane next to us at the time. I'm very shaky about things like that. Even a minor fender bender can be fatal when your platelets are below 20. On the way home, driving slow on a very bad tire, we ended up putting the car in a ditch. Thanks to the Lord and some helpful friends and neighbors, everything is going well today.
Regarding the procedure, Daniel did about five hours of pheresis yesterday. They were able to give me 10 million lymphocytes (the goal was 5-7 million) so I call that a success. The procedure itself was quite simple. I had premeds (benadryl and ativan) and then they injected the 14 ccs of blood product into my Hickman line. Took about ten seconds. The doctor told us he wants to see significant GVHD. The important thing is to catch it early so they can treat it with medication so I don't have long term damage. If I don't have GVHD with this infusion, they will probably do another. He said it often takes 2 or 3 treatments before they see significant GVHD. I don't know if I have that long, so I'm honestly praying we'll see it with this round -- normally flares within about a week. Praying to get sick seems odd, but it would definitely be the answer we need. We met a 26 yo AML patient yesterday who is currently in remission after having a stem cell transplant and subsequent DLI. (He was similar to me in that everything looked good until the 100 day biopsy.) That was definitely encouraging.
I'll see Dr. Perry this Wednesday, and the plan is to begin chemo again on the 9th. If I don't have GVHD with this DLI, we'll do another about 10-14 days out from this next round of chemo. The cells are frozen now so I shouldn't have to ask my brother to go under the needle again, which is nice. He's definitely been a trooper. Those are some BIG needles.
Regarding the procedure, Daniel did about five hours of pheresis yesterday. They were able to give me 10 million lymphocytes (the goal was 5-7 million) so I call that a success. The procedure itself was quite simple. I had premeds (benadryl and ativan) and then they injected the 14 ccs of blood product into my Hickman line. Took about ten seconds. The doctor told us he wants to see significant GVHD. The important thing is to catch it early so they can treat it with medication so I don't have long term damage. If I don't have GVHD with this infusion, they will probably do another. He said it often takes 2 or 3 treatments before they see significant GVHD. I don't know if I have that long, so I'm honestly praying we'll see it with this round -- normally flares within about a week. Praying to get sick seems odd, but it would definitely be the answer we need. We met a 26 yo AML patient yesterday who is currently in remission after having a stem cell transplant and subsequent DLI. (He was similar to me in that everything looked good until the 100 day biopsy.) That was definitely encouraging.
I'll see Dr. Perry this Wednesday, and the plan is to begin chemo again on the 9th. If I don't have GVHD with this DLI, we'll do another about 10-14 days out from this next round of chemo. The cells are frozen now so I shouldn't have to ask my brother to go under the needle again, which is nice. He's definitely been a trooper. Those are some BIG needles.
Saturday, March 24, 2007
Preparing for the DLI
My brother (stem cell donor) and I will be going to Barnes in STL on Monday for blood work. We each have to give up about 15 vials in preparation for the donor lymphocyte infusion (DLI) on Friday. I don't have Friday's appointment time yet, but we'll both be there again for pheresis and the infusion. If all goes well I can come home immediately afterwards. I am expecting to get sick as a result of the DLI. We are trying to cause GVHD in hopes of also having GVL (graft versus leukemia) to fight the disease. From what I've read, GVHD of the gut, mouth, skin and eyes are most common. The seriousness varies. It could land me in the hospital or be controlled with prescription steriods. If it doesn't kill me, I have hope of remission. The risks are very similar to having another transplant in a lot of ways. I'm approaching it with much fear and trembling. I've never been the adventurous type, yet find myself doing experimental chemo and procedures in an attempt to save my life. Quite ironic coming from the person who would never consider white water rafting or sky diving. I read about a woman the other day with AML who has undergone four transplants. I told my mom I have more respect for her than any olympian I've ever heard of.
In the meantime I'm staying in. My ANC was down to 200 on Thursday, so my immune system is basically non-existent. I still have to go out for labs twice a week. On Thursday I received blood and platelets. My platelets had dropped to 7, and I expect to need more again soon because one infusion doesn't usually bring them up that much. I hate when they get so low, because it's a battle to get them up again. In the meantime I face a lot of risks, as well as discomfort (easy bruising, petechiae rash, etc). Gary has learned that mommy is fragile and tries to be very careful around me.
In the meantime I'm staying in. My ANC was down to 200 on Thursday, so my immune system is basically non-existent. I still have to go out for labs twice a week. On Thursday I received blood and platelets. My platelets had dropped to 7, and I expect to need more again soon because one infusion doesn't usually bring them up that much. I hate when they get so low, because it's a battle to get them up again. In the meantime I face a lot of risks, as well as discomfort (easy bruising, petechiae rash, etc). Gary has learned that mommy is fragile and tries to be very careful around me.
Friday, March 16, 2007
Day Five
I'm done with chemo for the month. So far things are looking o.k., including today's blood work. I received some much needed platelets yesterday but it looks like I'll make it until sometime next week before I need another blood transfusion. From here on out I'll be doing blood work twice a week, and start a second round of chemo on April 9th. My white count is dropping and my neutrophils are still very low, so right now I am just trying to stay healthy enough to give us time to fight the disease. I live with the very real fact that one germ can end my life. I have to remember, too, that my body becomes my worst enemy at this time, as all of the natural bacteria can thrive. I'm on several prescriptions to help control that, and so far the Lord has granted health.
Side effects have been very minimal, which is a praise. Thanks for all your prayers! I don't know yet when I'll be getting the "booster" from Barnes. I'll keep you posted.
**Update**
We heard from Barnes this afternoon. I'll be going in on the 30th for the booster. (Outpatient) We're still waiting to receive clarification as to the exact type of cells I'll be receiving.
Side effects have been very minimal, which is a praise. Thanks for all your prayers! I don't know yet when I'll be getting the "booster" from Barnes. I'll keep you posted.
**Update**
We heard from Barnes this afternoon. I'll be going in on the 30th for the booster. (Outpatient) We're still waiting to receive clarification as to the exact type of cells I'll be receiving.
Monday, March 12, 2007
Day One
Cardiac arrest, heart failure, cerebral hemorrhage, pneumonia...the list of side effects on the drug information sheet I received this morning were sobering to say the least. I fought the aspect of chemo that is rarely mentioned -- psychological -- wanting to run but knowing that this poison holds potential life for me. Fighting to live, once again. Praying that this time it will work.
Meanwhile, the disease continues to rear its ugly head, and my blood work reminds me of how sick I really am. Friday's transfusions provided a much needed boost in my hemoglobin and platelets. I'm mostly concerned about my neutrophil count, which was around 800 today. I'm used to seeing those numbers after chemo, not before. This is my first time dealing with low counts outside of the hospital.
Thankfully treatment went well today. I have yet to experience any significant side effects. I'm fighting mouth sores as a result of low counts, and I had some nausea today, but was able to keep everything down with some help from zofran and compozine. Nausea seems to be the most common side effect with decitabine.
I'll be receiving a T-cell or lymphocyte "booster" the week of the 26th up at Barnes, where I received my transplant. The goal is to infuse another 5-7 million cells. I have 3.5 million frozen, so my brother will be going in for more pheresis. I appreciate his willingness to go through it again. I'm nervous about a possible GVHD flare, but it holds some promise of remission, so I'm willing to try.
Thank you for your continued prayers.
Meanwhile, the disease continues to rear its ugly head, and my blood work reminds me of how sick I really am. Friday's transfusions provided a much needed boost in my hemoglobin and platelets. I'm mostly concerned about my neutrophil count, which was around 800 today. I'm used to seeing those numbers after chemo, not before. This is my first time dealing with low counts outside of the hospital.
Thankfully treatment went well today. I have yet to experience any significant side effects. I'm fighting mouth sores as a result of low counts, and I had some nausea today, but was able to keep everything down with some help from zofran and compozine. Nausea seems to be the most common side effect with decitabine.
I'll be receiving a T-cell or lymphocyte "booster" the week of the 26th up at Barnes, where I received my transplant. The goal is to infuse another 5-7 million cells. I have 3.5 million frozen, so my brother will be going in for more pheresis. I appreciate his willingness to go through it again. I'm nervous about a possible GVHD flare, but it holds some promise of remission, so I'm willing to try.
Thank you for your continued prayers.
Saturday, March 10, 2007
Thursday, March 08, 2007
The Plan
Hast thou not known? hast thou not heard, [that] the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? [there is] no searching of his understanding. He giveth power to the faint; and to [them that have] no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew [their] strength; they shall mount up with wings as eagles; they shall run, and not be weary; [and] they shall walk, and not faint. - Isaiah 40:28-31
Weary pretty much sums up how I feel right now. I'm getting blood and platelets tomorrow, though, which will help. I made it three weeks without a transfusion. Not too bad...I'll certainly take it.
I'll be starting chemo again on Monday. Round six as far as I'm concerned. We'll be using Decitabine. It's somewhat experimental in that it's not commonly used for AML patients, but it has been recommended to us by several doctors, including Ohio State. (Ohio is currently using it with their patients, and also within at least one clinical trial that I know of.) It is supposed to be a "gentler" chemo as far as side effects go. My counts will be low, but they already are. That's the nature of AML. We are still working with my transplant team at Barnes to see about getting a stem cell booster after chemo. There is some risk of a GVHD flare, but at this point in my life all of the options hold considerable risk.
The chemo will be administered outpatient -- one hour a day for five days. I can stay out of the hospital as long as I'm healthy, so my prayer is of course for good health. I would also like to continue taking the Mannatech throughout this course, so minimal side effects such as nausea and changes in taste would also be helpful. We may ease up a bit on the diet restrictions I've been following. Weight loss is an issue for me. I just reached the 100 pound mark a few weeks ago.
The best thing about getting treatment is probably having access to the university's high speed internet, so I'm sure I'll keep everyone posted throughout this next week. We live far enough outside of Columbia to be forced to use dial-up as our home connection.
Thank you, once again, for your prayers.
Weary pretty much sums up how I feel right now. I'm getting blood and platelets tomorrow, though, which will help. I made it three weeks without a transfusion. Not too bad...I'll certainly take it.
I'll be starting chemo again on Monday. Round six as far as I'm concerned. We'll be using Decitabine. It's somewhat experimental in that it's not commonly used for AML patients, but it has been recommended to us by several doctors, including Ohio State. (Ohio is currently using it with their patients, and also within at least one clinical trial that I know of.) It is supposed to be a "gentler" chemo as far as side effects go. My counts will be low, but they already are. That's the nature of AML. We are still working with my transplant team at Barnes to see about getting a stem cell booster after chemo. There is some risk of a GVHD flare, but at this point in my life all of the options hold considerable risk.
The chemo will be administered outpatient -- one hour a day for five days. I can stay out of the hospital as long as I'm healthy, so my prayer is of course for good health. I would also like to continue taking the Mannatech throughout this course, so minimal side effects such as nausea and changes in taste would also be helpful. We may ease up a bit on the diet restrictions I've been following. Weight loss is an issue for me. I just reached the 100 pound mark a few weeks ago.
The best thing about getting treatment is probably having access to the university's high speed internet, so I'm sure I'll keep everyone posted throughout this next week. We live far enough outside of Columbia to be forced to use dial-up as our home connection.
Thank you, once again, for your prayers.
Friday, March 02, 2007
Update
Narrator: Little did he know that this simple seemingly innocuous act would result in his imminent death.
Harold Crick: What? What? Hey! HELLOOO! What? Why? Why MY death? HELLO? Excuse me? WHEN?
(quote from Stranger Than Fiction)
I was sitting in the waiting area of Ellis Fischel too early this morning when CNN broadcast a news story about several teenagers who died from a tornado yesterday, as well as a bus crash in Georgia that killed several college students. I was pondering the fact that life is so brief, and none of us know when we will be taken, or what will take us. Even now, it's easy for me to think the question is pretty much answered, but ultimately I don't know what will take me home, or when. I know I may sound hopeless or morbid to some of you, but that is not the case. I am preparing for a possibility of death. I think it is only prudent to do so in my situation, and honestly, I think it is prudent for everyone to do. None of us are immortal, and care should be taken to consider what comes next. I shared with a friend recently that I had been reading several articles on John Piper's website (www.desiringgod.com) regarding Heaven, as though studying up on some country I'm visiting on vacation soon. It's just all of a sudden become a very interesting topic to me. Sad that only the prospect of death has me at this place, because I believe as Christians we should be focusing on the fact that our stay on earth is quite brief and very temporal. Very little matters when you view it in light of eternity.
I told my husband the other day (who has kept me faithful all these months) that I am finally learning how much God hates sin. I HATE cancer. I am sick of it. And I realize cancer is just one more visible sign of sin in this world. So ultimately, I hate sin. And how much more does God hate sin? I am also realizing how helpless I am in this battle against AML. Just as helpless as I am, totally depraved and living in sin from the second I was born. Ultimately God is the cure, and He chooses to show mercy and grace as He wills. (Titus 3:5) He has already rescued me from the ultimate death of sin, and I trust He can rescue me from AML if He chooses. But if not, ultimately the price of sin has been paid, and I know I am secure, and I am thankful every second for the gift of faith. "My faith is like shifting sand, so I stand by grace." - Caedmon's Call
We've decided against pursuing treatment out of state at this point. A change in environment right now poses significant risk, and we've seen the Lord pretty effectively close the doors on a few options we were considering. The Phase One clinical trials my doctor mentioned are being conducted at Ohio State University. After speaking with an RN who heads up the AML trials there, we've decided against that route at this time. She pretty much summed it up with the statement, "If they don't kill her, which they probably will, she'll wish she were dead." We're not at that point yet. I think it is a noble thing to dedicate your body to science before your death, but I also know the people who do so have no other options.
At this time we are trying to get insurance approval for the chemo drug Decitabine, which is being used in conjunction with another drug at a trial in Ohio. It was recommended to us by Ohio and my local team as an "easier" (i.e. side effects) chemo drug, but they said they are having a hard time getting it approved by insurance for use at Barnes or MU (University of Missouri at Columbia, to clear up some confusion). We contacted the insurance company and they said they would look into covering it, so the social workers here are working on it. I hope to have an answer early next week, and if it is a yes, will probably go back into the hospital very soon. I'm already neutropenic, so there is a possibility I will end up there from an infection rather soon, anyway. It's only taken a few days for me to be reminded of how swiftly this disease works. Assuming all goes well with the chemo, I would also receive a stem cell booster from my brother -- some frozen, and possibly some newly obtained. I am being told that it is doubtful this will put me into remission. At best it may buy me some time. We'll see.
We've also been offered a second stem cell transplant by Ohio State. I don't know how feasible an option this is. Right now I'm kind of considering it a last resort, and again, I'm not quite there yet.
In the meantime, I'm getting regular bloodwork at Ellis Fischel. I'll need regular blood and platelet transfusions over the next weeks. (Thank you again to those who donate blood products, I have certainly mooched quite a bit over the past months. Barnes always emphasized a special need for more platelet donors.) I'm also continuing to use the Mannatech products, along with several other natural supplements and diet changes. Those who know me best know what a challenge this has been for me. I have yet to see an effect in my bloodwork, but it's only been about a week.
Thank you for your continued prayers on our behalf. I know the Lord hears them. Please always remember that even if I do not continue here on this earth, I will achieve ultimate healing in heaven. One way or the other, your prayers will all be answered. It is a miracle that we are not consumed day by day. (2 Cor. 4:16)
Harold Crick: What? What? Hey! HELLOOO! What? Why? Why MY death? HELLO? Excuse me? WHEN?
(quote from Stranger Than Fiction)
I was sitting in the waiting area of Ellis Fischel too early this morning when CNN broadcast a news story about several teenagers who died from a tornado yesterday, as well as a bus crash in Georgia that killed several college students. I was pondering the fact that life is so brief, and none of us know when we will be taken, or what will take us. Even now, it's easy for me to think the question is pretty much answered, but ultimately I don't know what will take me home, or when. I know I may sound hopeless or morbid to some of you, but that is not the case. I am preparing for a possibility of death. I think it is only prudent to do so in my situation, and honestly, I think it is prudent for everyone to do. None of us are immortal, and care should be taken to consider what comes next. I shared with a friend recently that I had been reading several articles on John Piper's website (www.desiringgod.com) regarding Heaven, as though studying up on some country I'm visiting on vacation soon. It's just all of a sudden become a very interesting topic to me. Sad that only the prospect of death has me at this place, because I believe as Christians we should be focusing on the fact that our stay on earth is quite brief and very temporal. Very little matters when you view it in light of eternity.
I told my husband the other day (who has kept me faithful all these months) that I am finally learning how much God hates sin. I HATE cancer. I am sick of it. And I realize cancer is just one more visible sign of sin in this world. So ultimately, I hate sin. And how much more does God hate sin? I am also realizing how helpless I am in this battle against AML. Just as helpless as I am, totally depraved and living in sin from the second I was born. Ultimately God is the cure, and He chooses to show mercy and grace as He wills. (Titus 3:5) He has already rescued me from the ultimate death of sin, and I trust He can rescue me from AML if He chooses. But if not, ultimately the price of sin has been paid, and I know I am secure, and I am thankful every second for the gift of faith. "My faith is like shifting sand, so I stand by grace." - Caedmon's Call
We've decided against pursuing treatment out of state at this point. A change in environment right now poses significant risk, and we've seen the Lord pretty effectively close the doors on a few options we were considering. The Phase One clinical trials my doctor mentioned are being conducted at Ohio State University. After speaking with an RN who heads up the AML trials there, we've decided against that route at this time. She pretty much summed it up with the statement, "If they don't kill her, which they probably will, she'll wish she were dead." We're not at that point yet. I think it is a noble thing to dedicate your body to science before your death, but I also know the people who do so have no other options.
At this time we are trying to get insurance approval for the chemo drug Decitabine, which is being used in conjunction with another drug at a trial in Ohio. It was recommended to us by Ohio and my local team as an "easier" (i.e. side effects) chemo drug, but they said they are having a hard time getting it approved by insurance for use at Barnes or MU (University of Missouri at Columbia, to clear up some confusion). We contacted the insurance company and they said they would look into covering it, so the social workers here are working on it. I hope to have an answer early next week, and if it is a yes, will probably go back into the hospital very soon. I'm already neutropenic, so there is a possibility I will end up there from an infection rather soon, anyway. It's only taken a few days for me to be reminded of how swiftly this disease works. Assuming all goes well with the chemo, I would also receive a stem cell booster from my brother -- some frozen, and possibly some newly obtained. I am being told that it is doubtful this will put me into remission. At best it may buy me some time. We'll see.
We've also been offered a second stem cell transplant by Ohio State. I don't know how feasible an option this is. Right now I'm kind of considering it a last resort, and again, I'm not quite there yet.
In the meantime, I'm getting regular bloodwork at Ellis Fischel. I'll need regular blood and platelet transfusions over the next weeks. (Thank you again to those who donate blood products, I have certainly mooched quite a bit over the past months. Barnes always emphasized a special need for more platelet donors.) I'm also continuing to use the Mannatech products, along with several other natural supplements and diet changes. Those who know me best know what a challenge this has been for me. I have yet to see an effect in my bloodwork, but it's only been about a week.
Thank you for your continued prayers on our behalf. I know the Lord hears them. Please always remember that even if I do not continue here on this earth, I will achieve ultimate healing in heaven. One way or the other, your prayers will all be answered. It is a miracle that we are not consumed day by day. (2 Cor. 4:16)
Friday, February 23, 2007
Diagnosis: 2 months
We met with Dr. Westervelt this morning and he basically gave me two months to live, possibly three. I admit I was thinking it might be a little longer than that, but I also went into today knowing that AML is extremely aggressive and it probably wouldn't be a great prognosis. He did offer us one option, and referred to it as FLAG treatment with a "booster" of stem cells from my brother. They want to admit me on Monday. The drugs he mentioned were either ones I've had before or are similar in their structure to ones I've had before, and sounded very much to me like induction treatment, which you would do when a person first presents with the disease. One of the drugs works by targetting a specific molecule within the cancer cell that may not even apply to me. He said it has a very poor chance of putting me in remission, but it's a chance and could buy us some time. It also carries a pretty high mortality rate, and being familiar with the drugs (high dose Ara-C and idarubacin (I've had daunarubicin)) I am fully aware of what quality of life would look like for what would most likely become a six week stay in the hospital. I do not want to spend the next six weeks of my eight weeks of life going to hell and back once again, away from my family and especially my baby. I've pretty much concluded at this point that it's not an option I'm open to trying.
In the meantime, I also received a blood transfusion. My iron had dropped over a full point in the past week, regardless of the Aranesp shot. In retrospect, Aranesp should not be given to patients with active myeloid leukemia and from my understanding has just aided in feeding the cancer. The blood is always an energy boost. It's important to note that the 2-3 month outlook is with regular transfusions. It's not just going home and doing nothing. I expect things would progress much faster in that case.
My husband has been on the phone all day and we put a call into my primary oncologist, Dr. Perry. He is out of the office until Tuesday, but very graciously called us from his home tonight. He was not pleased with the information I was given today and asked if we had been informed of "Phase One." We aren't familiar yet with what this is, but he is researching this weekend for me and will call us on Monday. He sounded very hopeful. I am so thankful for my team of oncologists at MU, and trust their expertise, especially that of Dr. Perry and Dr. Doll, who both specialize in blood cancers. They just aren't the same as a tumor based cancer and I like knowing that their main focus is on what I have specifically. He's given us the ray of hope we so desperately needed today.
Another option we are considering is alternative treatment through a clinic in Scottsdale. At first this door was closed to us due to the fact that the treatments would most likely not be covered by insurance. We've had a few families contact us and basically tell us that they don't want money to be an issue. I have been amazed and incredibly blessed by their willingness to share what God has given them, and there really aren't words to express the amount of gratitude we feel. We mentioned one of the possible treatments to Dr. Perry and he said he was aware of them, so he could give us more information on that as well. I just wanted to leap for joy when I heard that, because I wanted so badly to talk to someone who knew more about it, and here is my oncologist aware of alternative procedures.
We are also looking into using Mannatech products to boost my immune system. We've heard a lot of good things, and trust that God can use those products for healing if He so chooses.
At this point we just ask for prayer that we will be able to make the correct decision. We don't have a lot of time, and I am anxious to hear from Dr. Perry on Monday. I trust his opinion greatly. Thank you for your e-mails and notes of encouragement. You've been a blessing.
In the meantime, I also received a blood transfusion. My iron had dropped over a full point in the past week, regardless of the Aranesp shot. In retrospect, Aranesp should not be given to patients with active myeloid leukemia and from my understanding has just aided in feeding the cancer. The blood is always an energy boost. It's important to note that the 2-3 month outlook is with regular transfusions. It's not just going home and doing nothing. I expect things would progress much faster in that case.
My husband has been on the phone all day and we put a call into my primary oncologist, Dr. Perry. He is out of the office until Tuesday, but very graciously called us from his home tonight. He was not pleased with the information I was given today and asked if we had been informed of "Phase One." We aren't familiar yet with what this is, but he is researching this weekend for me and will call us on Monday. He sounded very hopeful. I am so thankful for my team of oncologists at MU, and trust their expertise, especially that of Dr. Perry and Dr. Doll, who both specialize in blood cancers. They just aren't the same as a tumor based cancer and I like knowing that their main focus is on what I have specifically. He's given us the ray of hope we so desperately needed today.
Another option we are considering is alternative treatment through a clinic in Scottsdale. At first this door was closed to us due to the fact that the treatments would most likely not be covered by insurance. We've had a few families contact us and basically tell us that they don't want money to be an issue. I have been amazed and incredibly blessed by their willingness to share what God has given them, and there really aren't words to express the amount of gratitude we feel. We mentioned one of the possible treatments to Dr. Perry and he said he was aware of them, so he could give us more information on that as well. I just wanted to leap for joy when I heard that, because I wanted so badly to talk to someone who knew more about it, and here is my oncologist aware of alternative procedures.
We are also looking into using Mannatech products to boost my immune system. We've heard a lot of good things, and trust that God can use those products for healing if He so chooses.
At this point we just ask for prayer that we will be able to make the correct decision. We don't have a lot of time, and I am anxious to hear from Dr. Perry on Monday. I trust his opinion greatly. Thank you for your e-mails and notes of encouragement. You've been a blessing.
Wednesday, February 21, 2007
The Results
Heaven got a lot closer today. We received the preliminary results from Friday's biopsy. The cancer has returned at 14% currently. We won't have detailed information until the cytogenetics are back from California (about 1 1/2 weeks), but it looks like the same one as before. We have an appointment on Friday to discuss options with the doctor. At this point they are few, and not very hopeful. I am not a candidate for high-dose chemo, which would be a normal procedure at this point, because I've already had every chemo drug, and have most likely built up a resistance. (Plus, I'm at a lifetime limit for some of them.) A second stem cell transplant only holds about a 5% success rate. They mentioned using chemo treatments to prolong life, but I think any hope of a "cure" would rest in experimental clinical trials, which aren't covered by insurance and thus really aren't an option in my mind. We have a lot of decisions to make over the weekend -- the kind couples in their 70s make. It all seems very unreal at the moment. It's hard to be hit with your own mortality. A part of me wanted so badly to believe that I had beat the odds, even though I've been a wreck this past week, knowing somehow that the news wouldn't be good. I think that is a sign of God's grace for me -- I needed to know deep down, because it is just too much to bear all at once.
We are heartbroken. This is not the news we wanted to hear. We wanted to raise our son, to grow old together, but God has different plans for our family. And as much as we don't understand them right now, we know that He is sovereign over this as well. Please pray for us, and for my family especially. My part in all of this is rather easy. I get to die and be with my Savior in glory. I get to miss out on all the suffering this world holds. It is my family who bear the grief and the pain day in and day out. It is for them that my heart breaks.
Hold your loved ones a little closer for me today. Live life a little more -- wear your dressy clothes around the house just because life is really short and stains don't really matter. Don't get impatient about the little things.
Someday we'll understand why.
We are heartbroken. This is not the news we wanted to hear. We wanted to raise our son, to grow old together, but God has different plans for our family. And as much as we don't understand them right now, we know that He is sovereign over this as well. Please pray for us, and for my family especially. My part in all of this is rather easy. I get to die and be with my Savior in glory. I get to miss out on all the suffering this world holds. It is my family who bear the grief and the pain day in and day out. It is for them that my heart breaks.
Hold your loved ones a little closer for me today. Live life a little more -- wear your dressy clothes around the house just because life is really short and stains don't really matter. Don't get impatient about the little things.
Someday we'll understand why.
Saturday, February 03, 2007
Approaching 90 days...
We're now traveling to Barnes every other week for appointments, as hoped. On the "off" week I have bloodwork done at Ellis Fischel here in Columbia. That's been really nice. Dr. Westervelt (Barnes) recommended yesterday that I have an Aranesp shot to help build the red blood cells in my body. He said I will feel a lot better if they can get my hematocrit over 30, and my hemoglobin up as well. (It is still sitting in the 9s.) I do get out of breath easily, and I've been anemic for so long I don't really remember what it feels like not to be...so I am anxious to see how this works. It comes with some nasty side effects, but other than the pain of the shot I've only noticed some additional fatigue. I go back to Barnes in two weeks and we rescheduled my bone marrow biopsy for that date so we don't have to go two weeks in a row. It is now scheduled for February 16th at 9 a.m. Dr. Westervelt said I will have another one done in about three months and then one year from transplant (so sometime in November) and then that will be all unless bloodwork indicates a need for another one. That will bring my total up to 10. Sounds like a nice stopping point to me. :-)
If the biopsy results are good, they will begin weaning me off of the immune suppressant I am currently taking. (Prograf, specifically). The purpose of this drug is to keep my brother's immune system from attacking my body (otherwise known as GVHD). I'm not entirely sure what to expect during this process. For now I'm just taking it a day at a time. We're still staying in to avoid illness. Strep, mono, and pneumonia have been going around at my husband's office, but thankfully the Lord has kept him in good health. I know several of you have been praying to that end, specifically -- thank you!
If the biopsy results are good, they will begin weaning me off of the immune suppressant I am currently taking. (Prograf, specifically). The purpose of this drug is to keep my brother's immune system from attacking my body (otherwise known as GVHD). I'm not entirely sure what to expect during this process. For now I'm just taking it a day at a time. We're still staying in to avoid illness. Strep, mono, and pneumonia have been going around at my husband's office, but thankfully the Lord has kept him in good health. I know several of you have been praying to that end, specifically -- thank you!
Thursday, January 18, 2007
60 Day Update
This past week marked 60 days since the transplant. A nice milestone, and I'm happy to say things are still looking good. I fully expected to need a blood transfusion due to low hemoglobin (iron) levels on Friday, as the week before they were in the range for transfusion, but I declined. Turns out those red cells were hard at work for me all week and my hemoglobin levels actually climbed for the first time. (From 8.9 to 9.2 in a week.) They have been offering me shots to kick my system into rebuilding faster. So far I've declined those. I'd prefer to do it on my own and avoid yet another drug with more side effects. My platelets have also been climbing on their own and I'm almost in the normal range. I haven't seen my actual transplant doctor in quite some time, though, so I'll see what he has to say about everything at my upcoming appointment on Friday. I am hoping that I can start going every other week or so now that I have hit the 60 day mark, but we'll see. Eventually I'll be able to transfer back to my local oncologist at Ellis Fischel. I look forward to that day! The drive to Barnes is about 240 miles round trip every Friday, and tends to be an exhausting day.
We received more good news from my 30 day biopsy on Friday. The results were back from California and show 100% engraftment. This means the transplant "took" and was a success. The nurse practitioner I've been seeing seemed very pleased. Brandon said from what he's read it's unusual to have 100% engraftment so soon, so we are very grateful. I should now have my brother's DNA and blood type. As my husband jokingly put it, I can get away with murder. :-) My next bone marrow biopsy and aspiration will be around day 100. It's the "big one" and will determine a lot, so as much as I don't want to go through another one, I recognize how important it is. We went ahead and scheduled it for 10 a.m. on February 23rd.
I am still experiencing various side effects from the chemo (neuropathy, specifically) and other problems that I relate to either mild GVHD or side effects of the many medications I'm on right now. We've been staying in to avoid the flu, so I only get out for doctor appointments. That gives me lots of time to spend with Gary, and I've slowly been taking on more responsibility around the house. Brandon still takes care of most things, though. I'm very thankful for him.
Thank you for your continued prayer on our behalf. We are so grateful to the Lord for the good news and His many mercies on our behalf.
We received more good news from my 30 day biopsy on Friday. The results were back from California and show 100% engraftment. This means the transplant "took" and was a success. The nurse practitioner I've been seeing seemed very pleased. Brandon said from what he's read it's unusual to have 100% engraftment so soon, so we are very grateful. I should now have my brother's DNA and blood type. As my husband jokingly put it, I can get away with murder. :-) My next bone marrow biopsy and aspiration will be around day 100. It's the "big one" and will determine a lot, so as much as I don't want to go through another one, I recognize how important it is. We went ahead and scheduled it for 10 a.m. on February 23rd.
I am still experiencing various side effects from the chemo (neuropathy, specifically) and other problems that I relate to either mild GVHD or side effects of the many medications I'm on right now. We've been staying in to avoid the flu, so I only get out for doctor appointments. That gives me lots of time to spend with Gary, and I've slowly been taking on more responsibility around the house. Brandon still takes care of most things, though. I'm very thankful for him.
Thank you for your continued prayer on our behalf. We are so grateful to the Lord for the good news and His many mercies on our behalf.
Saturday, December 30, 2006
Happy New Year
December 28th:
I hope everyone is enjoying the holiday season with their family. We had a nice Christmas. The bone marrow biopsy went o.k. Not the best, not the worst. I have had a lot of lingering pain, which I am still dealing with, but overall I think this time was better than the last. I've been seeing a chiropractor and she's been able to fix the rib problem I had, eliminating yet another source of pain.
The medicine my doctor prescribed for the neuropathy caused severe swelling in my feet, ankles and calves, to the point that walking was excruciating. I quit taking it after two days. It seems to have, at least temporarily, helped with the neuropathy, for which I am thankful.
I find out the results of last week's bone marrow biopsy tomorrow at my weekly appointment. I'll let you know. This one doesn't tell us a whole lot, but it tells enough that I'm nervous about the results. Trying to learn not to be. I know it's a faith issue I need to deal with because this is how it's going to be the rest of my life, and I can't spend it on pins and needles waiting for the next test result. I received the following advice on a Christmas card from one of my doctors:
Life is good -- but regrets can drive you mad
Walk blindly into the light and reach out for His hand
Don't ask any questions and don't try to understand
Open up your mind and then open up your heart
Be happy and never hate
Don't waste time, there is something more that you've been handed
It was such a good reminder to me. Life IS a gift -- for all of us. Nobody knows their days. But for me? There is something more I've been handed. Thousands of people went before me and died going through clinical trials while they figured out what the best treatment options were, and thousands more are still dying in those same trials -- always and ever seeking a cure for this horrible disease. I go to the cancer hospital and see so many sick, depressed, horrible looking people that I didn't know really existed before I got sick. Were my eyes just blind to it? I don't know. Did I just look away like everyone else does when I'm out in public without a wig, wearing a surgical mask? I wish for just one day that all of those with cancer would just be brave and go out bald and make everyone aware of how HUGE of a disease this has become. I think you would all be shocked. Maybe then more children would grow up to be oncologists, maybe then more people would register to be stem cell/bone marrow donors. I don't know...in the meantime, I know I pray for a cure, for myself, and for all the others I have come to know who are suffering, some as young as 6 months.
As a side note, as it is nearing the end of the year, and some of you may be looking for a good charity for tax deduction purposes, consider the American Leukemia and Lymphoma Society (www.leukemia-lymphoma.org), or the American Cancer Society (www.cancer.org). They both do a lot of good things for those of us who are ill.
Update: December 30th
I went to the doctor yesterday and got the results from my biopsy. They had warned me that at 30 days they wouldn't be able to tell much because most of the cells would still be immature (one of my doctors described it as a bunch of babies and you don't know if they're going to grow up to be juvenile delinquents (leukemic) or good cells. They had also warned me that it's not unusual at this point to see some leukemic cells. Well, I had 40% mature cells and in capitol letters on the report, "NO EVIDENCE OF ACUTE LEUKEMIA." This technically means I am finally in remission and I asked the nurse practitioner if this was good and I should be happy and she said yes, it's a wonderful report for 30 days. I'll have another biopsy at 100 days, so sometime in February, and we want that to be clean as well. Ultimately they want me to make it a year from transplant (11/13) without a relapse because that greatly lowers the overall risk of relapse. If I make it five years without a relapse, I'll be considered "cured."
I also found out that the extreme nausea and vomiting I struggled with last week is most likely a mild form of GVHD. They had warned me about Daniel's immune system attacking my gut, but placed more emphasis on things like diarrhea and didn't mention vomiting, so it didn't come to mind. I've been doing better the last few days and have a prescription written to take if it gets bad again. It's a steroid, so I would prefer to avoid it if possible. Mild GVHD is a good thing, so I'm not complaining too much. I'm so used to throwing up it doesn't really phase me anymore. It just bothers me because it interferes with weight gain. I was down a few pounds this week but I also lost all the swelling in my legs and feet, and I'm wondering if that had more to do with it than anything else. Otherwise my appetite is good, for which I am thankful.
I'll put an end to this lengthy post and bid you all a Happy New Year! I'm quite content to say goodbye to 2006 and pray for a better 2007.
Love you all,
Amy
I hope everyone is enjoying the holiday season with their family. We had a nice Christmas. The bone marrow biopsy went o.k. Not the best, not the worst. I have had a lot of lingering pain, which I am still dealing with, but overall I think this time was better than the last. I've been seeing a chiropractor and she's been able to fix the rib problem I had, eliminating yet another source of pain.
The medicine my doctor prescribed for the neuropathy caused severe swelling in my feet, ankles and calves, to the point that walking was excruciating. I quit taking it after two days. It seems to have, at least temporarily, helped with the neuropathy, for which I am thankful.
I find out the results of last week's bone marrow biopsy tomorrow at my weekly appointment. I'll let you know. This one doesn't tell us a whole lot, but it tells enough that I'm nervous about the results. Trying to learn not to be. I know it's a faith issue I need to deal with because this is how it's going to be the rest of my life, and I can't spend it on pins and needles waiting for the next test result. I received the following advice on a Christmas card from one of my doctors:
Life is good -- but regrets can drive you mad
Walk blindly into the light and reach out for His hand
Don't ask any questions and don't try to understand
Open up your mind and then open up your heart
Be happy and never hate
Don't waste time, there is something more that you've been handed
It was such a good reminder to me. Life IS a gift -- for all of us. Nobody knows their days. But for me? There is something more I've been handed. Thousands of people went before me and died going through clinical trials while they figured out what the best treatment options were, and thousands more are still dying in those same trials -- always and ever seeking a cure for this horrible disease. I go to the cancer hospital and see so many sick, depressed, horrible looking people that I didn't know really existed before I got sick. Were my eyes just blind to it? I don't know. Did I just look away like everyone else does when I'm out in public without a wig, wearing a surgical mask? I wish for just one day that all of those with cancer would just be brave and go out bald and make everyone aware of how HUGE of a disease this has become. I think you would all be shocked. Maybe then more children would grow up to be oncologists, maybe then more people would register to be stem cell/bone marrow donors. I don't know...in the meantime, I know I pray for a cure, for myself, and for all the others I have come to know who are suffering, some as young as 6 months.
As a side note, as it is nearing the end of the year, and some of you may be looking for a good charity for tax deduction purposes, consider the American Leukemia and Lymphoma Society (www.leukemia-lymphoma.org), or the American Cancer Society (www.cancer.org). They both do a lot of good things for those of us who are ill.
Update: December 30th
I went to the doctor yesterday and got the results from my biopsy. They had warned me that at 30 days they wouldn't be able to tell much because most of the cells would still be immature (one of my doctors described it as a bunch of babies and you don't know if they're going to grow up to be juvenile delinquents (leukemic) or good cells. They had also warned me that it's not unusual at this point to see some leukemic cells. Well, I had 40% mature cells and in capitol letters on the report, "NO EVIDENCE OF ACUTE LEUKEMIA." This technically means I am finally in remission and I asked the nurse practitioner if this was good and I should be happy and she said yes, it's a wonderful report for 30 days. I'll have another biopsy at 100 days, so sometime in February, and we want that to be clean as well. Ultimately they want me to make it a year from transplant (11/13) without a relapse because that greatly lowers the overall risk of relapse. If I make it five years without a relapse, I'll be considered "cured."
I also found out that the extreme nausea and vomiting I struggled with last week is most likely a mild form of GVHD. They had warned me about Daniel's immune system attacking my gut, but placed more emphasis on things like diarrhea and didn't mention vomiting, so it didn't come to mind. I've been doing better the last few days and have a prescription written to take if it gets bad again. It's a steroid, so I would prefer to avoid it if possible. Mild GVHD is a good thing, so I'm not complaining too much. I'm so used to throwing up it doesn't really phase me anymore. It just bothers me because it interferes with weight gain. I was down a few pounds this week but I also lost all the swelling in my legs and feet, and I'm wondering if that had more to do with it than anything else. Otherwise my appetite is good, for which I am thankful.
I'll put an end to this lengthy post and bid you all a Happy New Year! I'm quite content to say goodbye to 2006 and pray for a better 2007.
Love you all,
Amy
Thursday, December 14, 2006
General Update
I thought I should write a general update so you all know what life is like right now. I'm down to one doctor visit a week -- at Barnes in St. Louis. Much better than the original 2-3 appointments for blood draws that I originally thought I'd have. That could change, but I'm happy with it for now. I have an appointment tomorrow and I am curious to find out what my counts are because my energy level is really low. I'm hoping I won't need a blood transfusion, but that's not uncommon at this point and is a distinct possibility.
Originally they wanted to do the bone marrow biopsy tomorrow but they didn't have an opening, so it is scheduled for next Friday, which I believe is the 22nd. We discussed various options regarding pain medication/sedation and I expect this one to go much better. Hopefully I won't have the swelling and pain for days afterwards. I just want to have a very special Christmas with my family this year.
Two of my sisters are still here assisting me as my strength has been slow to return. I'm so thankful for their willingness to serve me and sometimes it seems be my personal maids. Mom pointed out that it's only been a month since I was basically dead -- all my counts at zero, and to not be hard on myself. One of my old friends wrote on the blog to "Rest in the Lord, and trust in His strength." I needed to hear that today, thank you.
Other than the overall weakness, my only other struggle has been with side effects from either the radiation, chemo, or both. I've developed what I think is neuropathy, mostly in my feet, and for some reason mostly at night. The pain is bad enough to keep me from sleeping, though enough pain meds eventually knock me out. I'll be talking to the doctor about it tomorrow. Thankfully from what I've read this is a less common side effect that should eventually go away. I've also lost most of my eye brows and eye lashes, and the hair on my head is still falling out. I had about 3/4" growth prior to the transplant but we had to shave it off while I was at Barnes. I think the chemo they gave me was some rough stuff. I'm anxious for the growth to return. The radiation also leaves me with very, very dry skin that also feels like a sunburn, and even lukewarm water feels hot to the touch. These are little things in comparison to the overall picture, but as I said, I just wanted to let you know what life is like right now.
Blessings,
Amy
Originally they wanted to do the bone marrow biopsy tomorrow but they didn't have an opening, so it is scheduled for next Friday, which I believe is the 22nd. We discussed various options regarding pain medication/sedation and I expect this one to go much better. Hopefully I won't have the swelling and pain for days afterwards. I just want to have a very special Christmas with my family this year.
Two of my sisters are still here assisting me as my strength has been slow to return. I'm so thankful for their willingness to serve me and sometimes it seems be my personal maids. Mom pointed out that it's only been a month since I was basically dead -- all my counts at zero, and to not be hard on myself. One of my old friends wrote on the blog to "Rest in the Lord, and trust in His strength." I needed to hear that today, thank you.
Other than the overall weakness, my only other struggle has been with side effects from either the radiation, chemo, or both. I've developed what I think is neuropathy, mostly in my feet, and for some reason mostly at night. The pain is bad enough to keep me from sleeping, though enough pain meds eventually knock me out. I'll be talking to the doctor about it tomorrow. Thankfully from what I've read this is a less common side effect that should eventually go away. I've also lost most of my eye brows and eye lashes, and the hair on my head is still falling out. I had about 3/4" growth prior to the transplant but we had to shave it off while I was at Barnes. I think the chemo they gave me was some rough stuff. I'm anxious for the growth to return. The radiation also leaves me with very, very dry skin that also feels like a sunburn, and even lukewarm water feels hot to the touch. These are little things in comparison to the overall picture, but as I said, I just wanted to let you know what life is like right now.
Blessings,
Amy
Tuesday, December 05, 2006
...and this little piggy went all the way home
I was just sitting here thinking of a hymn and decided to look up the words. I didn't know all of the verses, but found it so perfectly appropriate for how I feel today that I thought I'd just post the whole thing.
"Praise to the Lord, the Almighty"
by Joachim Neander, 1650-1680
Translated by Catherine Winkworth, 1829-1878
1. Praise to the Lord, the Almighty, the King of creation!
O my soul, praise Him, for He is Thy Health and Salvation!
Join the full throng:
Wake, harp and psalter and song;
Sound forth in glad adoration!
2. Praise to the Lord, who o'er all things so wondrously reigneth,
Who, as on wings of an eagle, uplifteth, sustaineth.
Hast thou not seen
How thy desires all have been
Granted in what He ordaineth?
3. Praise to the Lord, who hath fearfully, wondrously, made thee;
Health hath vouchsafed and, when heedlessly falling, hath stayed thee.
What need or grief
Ever hath failed of relief?--
Wings of His mercy did shade thee.
4. Praise to the Lord, who doth prosper thy work and defend thee,
Who from the heavens the streams of His mercy doth send thee.
Ponder anew
What the Almighty can do,
Who with His love doth befriend thee.
5. Praise to the Lord! Oh, let all that is in me adore Him!
All that hath life and breath, come now with praises before Him!
Let the Amen
Sound from His people again;
Gladly for aye we adore Him.
Anyway, today is just a quick update on where things stand. I am home now, and lovin' it. Gary has grown up SO much. It's been great to spend time with him again. My sisters are still here helping because I'm under a lot of restrictions. I can't clean, for one thing, which is really frustrating. Apparently dust is a really bad thing. I have a special industrial strength mask I have to wear whenever I'm out, or around dust, so anyway, they will probably still be here helping me for a while even though I feel stronger everyday. I am still weak and tire easily, but my energy level is night and day compared to other returns from the hospital.
I'll be doing my bloodwork tomorrow at Ellis Fischel, as originally planned, and then I have an apppointment at Barnes on Friday. We'll probably be at Barnes once a week for a while, just so they can keep a close eye on things like signs of GVHD. We can handle that though. It's definitely worth it to be home. Otherwise life will be rather confined for a while as my immune system builds. I have to be especially careful due to cold/flu season, so I won't be out and about much at all. Even a slight fever means a return to the hospital, and I am praying that won't happen.
Please just continue to pray for strength and health, and that GVHD won't be a problem. A little bit of it is an o.k. thing, but our prayer is that the Lord will protect from the serious stuff. Also, I will most likely have a bone marrow biopsy done next week. I know I mentioned it once, but I am struggling with anxiety over going through the procedure yet again, even though the results are so important to know. I wish my brain could forget the pain, but alas...I remember all too well.
I'm thankful for all of you -- I was thinking today about all of the encouragement you have given, and the blessing of some amazing doctors and nurses that the Lord has allowed me to work with. Truly, I feel most blessed.
"Praise to the Lord, the Almighty"
by Joachim Neander, 1650-1680
Translated by Catherine Winkworth, 1829-1878
1. Praise to the Lord, the Almighty, the King of creation!
O my soul, praise Him, for He is Thy Health and Salvation!
Join the full throng:
Wake, harp and psalter and song;
Sound forth in glad adoration!
2. Praise to the Lord, who o'er all things so wondrously reigneth,
Who, as on wings of an eagle, uplifteth, sustaineth.
Hast thou not seen
How thy desires all have been
Granted in what He ordaineth?
3. Praise to the Lord, who hath fearfully, wondrously, made thee;
Health hath vouchsafed and, when heedlessly falling, hath stayed thee.
What need or grief
Ever hath failed of relief?--
Wings of His mercy did shade thee.
4. Praise to the Lord, who doth prosper thy work and defend thee,
Who from the heavens the streams of His mercy doth send thee.
Ponder anew
What the Almighty can do,
Who with His love doth befriend thee.
5. Praise to the Lord! Oh, let all that is in me adore Him!
All that hath life and breath, come now with praises before Him!
Let the Amen
Sound from His people again;
Gladly for aye we adore Him.
Anyway, today is just a quick update on where things stand. I am home now, and lovin' it. Gary has grown up SO much. It's been great to spend time with him again. My sisters are still here helping because I'm under a lot of restrictions. I can't clean, for one thing, which is really frustrating. Apparently dust is a really bad thing. I have a special industrial strength mask I have to wear whenever I'm out, or around dust, so anyway, they will probably still be here helping me for a while even though I feel stronger everyday. I am still weak and tire easily, but my energy level is night and day compared to other returns from the hospital.
I'll be doing my bloodwork tomorrow at Ellis Fischel, as originally planned, and then I have an apppointment at Barnes on Friday. We'll probably be at Barnes once a week for a while, just so they can keep a close eye on things like signs of GVHD. We can handle that though. It's definitely worth it to be home. Otherwise life will be rather confined for a while as my immune system builds. I have to be especially careful due to cold/flu season, so I won't be out and about much at all. Even a slight fever means a return to the hospital, and I am praying that won't happen.
Please just continue to pray for strength and health, and that GVHD won't be a problem. A little bit of it is an o.k. thing, but our prayer is that the Lord will protect from the serious stuff. Also, I will most likely have a bone marrow biopsy done next week. I know I mentioned it once, but I am struggling with anxiety over going through the procedure yet again, even though the results are so important to know. I wish my brain could forget the pain, but alas...I remember all too well.
I'm thankful for all of you -- I was thinking today about all of the encouragement you have given, and the blessing of some amazing doctors and nurses that the Lord has allowed me to work with. Truly, I feel most blessed.
Monday, December 04, 2006
Home?
I think I will be going home today, and by home, I mean home. I'm very happy about this. We made an appeal to my doctor after we found out that most of the multiple visits per week were for blood work. It looks like I'll be able to have my blood work done at Ellis Fischel, and then come to Barnes once a week or so for a while to meet with my doctors here. I don't know exact plans yet, but I love the glimmer of hope.
I apologize for the lack of updates recently. At first it was due to not having access to a laptop (I've used my husband's work laptop until now) but I was blessed by one of my former pastors who put together a laptop for me to use. I am incredibly grateful to him for his kindness and all the ways he has impacted my life over the years.
The days after a transplant become rather monotonous, which is another reason I haven't written much. It's just all a waiting game. Waiting for counts to rise...waiting for any signs of a problem. Trying to rebuild strength...eat...drink. That is mostly what life has been like. I've lost a tremendous amount of weight, so a major focus right now is on trying to consume enough protein and calories to begin to regain what was lost. Eating isn't always easy. I don't know if it is lingering effects of the chemo, drug side effects, or what, but most of the time I have to force myself to eat, and that's probably been one of the hardest parts of all this.
Thank you all for your prayers. So far the Lord has been merciful to me, and I pray I am "healed" of this disease, as much as is possible. I'll be having a bone marrow biopsy within the next few weeks and I'm anxious to know the results, though dreading the procedure.
For the basket filled with special little surprises, the CDs and books, the cards, the e-mails -- all the things you do to serve me, I thank you. Blessings, Amy
I apologize for the lack of updates recently. At first it was due to not having access to a laptop (I've used my husband's work laptop until now) but I was blessed by one of my former pastors who put together a laptop for me to use. I am incredibly grateful to him for his kindness and all the ways he has impacted my life over the years.
The days after a transplant become rather monotonous, which is another reason I haven't written much. It's just all a waiting game. Waiting for counts to rise...waiting for any signs of a problem. Trying to rebuild strength...eat...drink. That is mostly what life has been like. I've lost a tremendous amount of weight, so a major focus right now is on trying to consume enough protein and calories to begin to regain what was lost. Eating isn't always easy. I don't know if it is lingering effects of the chemo, drug side effects, or what, but most of the time I have to force myself to eat, and that's probably been one of the hardest parts of all this.
Thank you all for your prayers. So far the Lord has been merciful to me, and I pray I am "healed" of this disease, as much as is possible. I'll be having a bone marrow biopsy within the next few weeks and I'm anxious to know the results, though dreading the procedure.
For the basket filled with special little surprises, the CDs and books, the cards, the e-mails -- all the things you do to serve me, I thank you. Blessings, Amy
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