Most folks know that Sofie left this earthly existence yesterday just before 5:00 p.m. The last twenty-four hours were tough and this experience is hard to handle. The girls and I greatly appreciate all of the kind thoughts, prayers, and tears shed for our loss. We will need all of your help during the next few weeks and months.
Today, my sister Amy arrived from Boston, having left at basically a moments notice to come here. She is awesome and we couldn't get through this stage of our grief without her. We are having a memorial service for Sofie on Wednesday, March 28th at 3:00 p.m. at Port City Community Church. We're planning for a reception to follow. I will post more details as plans converge.
I miss Sofie so much that I physically hurt. I know that she is in a better place and her suffering has ended. Yesterday, there was a great celebration in Heaven. At this moment, with that knowledge and with the love of everyone who has kept us in thoughts and prayers, we will get through today.
Thursday, March 22, 2012
Tuesday, March 13, 2012
Geoff's update for Sofie
This is Geoff writing for Sofie with an update.
Sofie went to the hospital last Friday, March 9th via the Leland Fire/Rescue crew. Those men gave her excellent care and treatment for a very frightening event. She had shortness of breath and an oxygen level of 80 (healthy is between 96 and 100). It took some lidocaine to get her heart under control. Arriving at the ER around 4:00, the physicians ran CT scans, x-rays and concluded that Sofie has pneumonia. She was admitted and we made it to a room by 12:45 a.m. In addition to her breathing problems, heart issue, and pneumonia, she had a great deal of pain in her left chest, right side and upper back. It was a difficult night.
After a couple rounds of IV antibiotics and IV pain medications, the hospital transferred her from the 10th floor to the 8th floor for cardiac issues. That transition was not smooth to say the least and it was frustrating dealing with some of the problems with it. Our minister stopped by around this time, which helped keep us from expressing ourselves with inappropriate language. Saturday and Sunday were tough days and it is no fun to watch someone who you love suffer with such pain.
Yesterday, Sofie improved some and her doctor expected to discharge her on Tuesday. After getting that good news, there was some sobering moments, meeting with some staff from Hospice and arranging for additional help.
Sofie will have oxygen at home. She will have it in a portable bag. She will also have a cane and a wheelchair because of all of those complications that come with heart and lung problems.
We are sitting here now, waiting for the discharge orders. Thank you to all who stopped in and visited with Sofie, especially during those times where I had to slip away. Thank you to all who have kept us in your prayers.
Sofie went to the hospital last Friday, March 9th via the Leland Fire/Rescue crew. Those men gave her excellent care and treatment for a very frightening event. She had shortness of breath and an oxygen level of 80 (healthy is between 96 and 100). It took some lidocaine to get her heart under control. Arriving at the ER around 4:00, the physicians ran CT scans, x-rays and concluded that Sofie has pneumonia. She was admitted and we made it to a room by 12:45 a.m. In addition to her breathing problems, heart issue, and pneumonia, she had a great deal of pain in her left chest, right side and upper back. It was a difficult night.
After a couple rounds of IV antibiotics and IV pain medications, the hospital transferred her from the 10th floor to the 8th floor for cardiac issues. That transition was not smooth to say the least and it was frustrating dealing with some of the problems with it. Our minister stopped by around this time, which helped keep us from expressing ourselves with inappropriate language. Saturday and Sunday were tough days and it is no fun to watch someone who you love suffer with such pain.
Yesterday, Sofie improved some and her doctor expected to discharge her on Tuesday. After getting that good news, there was some sobering moments, meeting with some staff from Hospice and arranging for additional help.
Sofie will have oxygen at home. She will have it in a portable bag. She will also have a cane and a wheelchair because of all of those complications that come with heart and lung problems.
We are sitting here now, waiting for the discharge orders. Thank you to all who stopped in and visited with Sofie, especially during those times where I had to slip away. Thank you to all who have kept us in your prayers.
Wednesday, February 29, 2012
Cancer sucks too
Sorry I've been off the radar for awhile, but my health has worsened. One of the really bad things about having 2 forms of incurable cancer is that my symptoms only seem to get worse, and almost never get better.
My latest issue has been anemia. While I've been battling this since I was diagnosed with MDS last summer, it continues to worsen. I was hospitalized three times over the course of 2 weeks, both in Chapel Hill and at home and I have needed red blood and platelet transfusions about every 10 days to 2 weeks. In between the transfusions, I have ZERO energy. Those who know me well know that I love being active. My activity level has dwindled to where going up the stairs in our house is to be avoided because, even shortly after a transfusion, it leaves me lightheaded, dizzy and weak. By the time my hemoglobin is worthy of a transfusion, 8 or lower, I can barely get myself off the bed. A month ago I was trying to do 20 or 30 minute easy yoga or pilates DVDs but I can't even handle that now. Last night, Hadley and I walked the dog about a mile and it resulted in severe shoulder pain. A few days before, our entire family walked the dog the same route and it left me with a stabbing pain in my upper right abdominal area (yes, I have liver mets too). So, exercise is a no go these days and that makes me sad :(
Anyhoo, Geoff and I are going to try and get the family away for a one week stay somewhere in the Caribbean. We want to pull out all the stops, stay somewhere we can almost sleep on the beach but still be waited on hand and foot. We want the family to take one last vacation while I still can -- not to be morose but we're scared that by the end of April I may not have the energy to go anywhere.
The difference in my energy level and overall condition has dramatically worsened since our Paris trip. These weeks have been very difficult for our family. Geoff is exhausted from driving both girls to different gymnastics meets all over the east coast every weekend (by himself). He works all week and then does the bulk of the child care every evening and weekend. The girls are sad because they are watching their mama worsen and spend all day and night in bed, missing their gymnastics meets and everything else. (BTW, my husband rocks, he is my soulmate, and I cannot express how much I love him and how impressed I am by his ability to rise to the occasion!)
As for me, I feel strange when I leave the house. It is very difficult to do so and I do not go anywhere very often as a result. But of course, that is not an exciting life either.
Thus, Geoff and I want to build some happy memories for the spring of 2012. We want to go somewhere warm, luxurious but that is not $30,000 (eek!). I am thinking Jamaica (Half Moon Bay Resort), Andros Island in the Bahamas, St. Martin (rent a villa on the beach this time), Anguilla, or maybe Barbados. I'll get a travel agent this time ;)
Thanks to all who have provided food and rides! We could not make it without you! I hope to have more smiling beach photos to post soon.
Health and happiness to all and God Bless!
Sofie
My latest issue has been anemia. While I've been battling this since I was diagnosed with MDS last summer, it continues to worsen. I was hospitalized three times over the course of 2 weeks, both in Chapel Hill and at home and I have needed red blood and platelet transfusions about every 10 days to 2 weeks. In between the transfusions, I have ZERO energy. Those who know me well know that I love being active. My activity level has dwindled to where going up the stairs in our house is to be avoided because, even shortly after a transfusion, it leaves me lightheaded, dizzy and weak. By the time my hemoglobin is worthy of a transfusion, 8 or lower, I can barely get myself off the bed. A month ago I was trying to do 20 or 30 minute easy yoga or pilates DVDs but I can't even handle that now. Last night, Hadley and I walked the dog about a mile and it resulted in severe shoulder pain. A few days before, our entire family walked the dog the same route and it left me with a stabbing pain in my upper right abdominal area (yes, I have liver mets too). So, exercise is a no go these days and that makes me sad :(
Anyhoo, Geoff and I are going to try and get the family away for a one week stay somewhere in the Caribbean. We want to pull out all the stops, stay somewhere we can almost sleep on the beach but still be waited on hand and foot. We want the family to take one last vacation while I still can -- not to be morose but we're scared that by the end of April I may not have the energy to go anywhere.
The difference in my energy level and overall condition has dramatically worsened since our Paris trip. These weeks have been very difficult for our family. Geoff is exhausted from driving both girls to different gymnastics meets all over the east coast every weekend (by himself). He works all week and then does the bulk of the child care every evening and weekend. The girls are sad because they are watching their mama worsen and spend all day and night in bed, missing their gymnastics meets and everything else. (BTW, my husband rocks, he is my soulmate, and I cannot express how much I love him and how impressed I am by his ability to rise to the occasion!)
As for me, I feel strange when I leave the house. It is very difficult to do so and I do not go anywhere very often as a result. But of course, that is not an exciting life either.
Thus, Geoff and I want to build some happy memories for the spring of 2012. We want to go somewhere warm, luxurious but that is not $30,000 (eek!). I am thinking Jamaica (Half Moon Bay Resort), Andros Island in the Bahamas, St. Martin (rent a villa on the beach this time), Anguilla, or maybe Barbados. I'll get a travel agent this time ;)
Thanks to all who have provided food and rides! We could not make it without you! I hope to have more smiling beach photos to post soon.
Health and happiness to all and God Bless!
Sofie
Monday, January 30, 2012
Chemo sucks
Hi everyone,
I started the Vidaza treatment January 16 for the MDS. This is supposed to raise my blood counts, in the long run, and reduce my dependence on blood transfusions. Of course, in the short run, it reduces my blood counts even more. (?) and has a whole host of other fun side effects.
I, with the help of my doctors at UNC, arranged to get the Vidaza administered here in Leland by Dr. Arb since the treatment is supposed to be M-F one week and M-Tues the following week. I won't go into the difficulty of doing that (can you say red tape!), since I used to see Dr. Kotz at Hanover Medical in Wilmington, but anyway..... I am now a patient of Dr. Arb for local treatments like this.
The doctors kind of minimized the side effects of Vidaza. Seems like that always happens.... I started with sub-cutaneous injection of this med. I have one arm and a belly to use as a pin cushion for this fun. Two shots per day. I got the shots in my left arm (can't use the right b/c of lymph node removal in 2007) and then did 2 days in my belly, for a total of 4 shots there. My belly turned black and blue, with red circles around it; it was disgusting!!!! Anyway, after that I decided to go to the infused Vidaza that goes through my port. Of course, that causes more nausea (I already had a lot of nausea). So, I made it 5 days and then asked Dr. Foster if we could call it done. He said yes, thank God! I felt just as bad as I did after the Adriamycin that caused this blood problem in the first place. Did I mention I hate chemo?!
I am supposed to do the Vidaza 3-4 cycles to make sure it works. But life goes on, right? Geoff and I got tickets to see Elton John at the RBC center March 16 and I will NOT be doing Vidaza that week even though I am currently scheduled to do so. I'd be puking the whole ride up to Raleigh otherwise! So we may have to be a little bit flexible with the Vidaza scheduling. I have mixed feelings about bothering with this to begin with.....no treatment has worked for me yet, you know?
So, I went to get my blood checked last Friday the 27th. Geoff and the girls were in the car headed for Maryland for Hope's rhythmic gymnastics meet. Of course, I needed a blood and platelet transfusion. My platelet count was 7!!!! It's supposed to be around 140 but has lately been 25 ish. At 7, I was at risk of bleeding to death internally, around the brain, or in the gums. Thank goodness, the only SE I saw was red dots all over my legs.
Anyhoo, I drove myself to the hospital for a transfusion, thinking I'd be home that night. Instead, I got admitted overnight and they didn't finish the transfusion until after 3 am!!! I can't say it was restful, because every hour or so they had to change bags or check vitals or whatever. Anyway, I got a platelet as well as a blood transfusion. Unfortunately, the platelets only last 3-4 days, but I should be good to go despite that for a couple of weeks (fingers crossed!)
So, my life has become fairly slow. I spend a lot of time in our new (awesome) Tempur Pedic bed with the adjustable mattress!!! (I was so uncomfortable at the hospitable in the lousy bed it wasn't even funny). Now, I can raise the mattress to read or watch tv, or whatever and my back has been loving it.
I walk the dog about a mile most days. I try to do yoga or pilates for about 30 minutes a few times a week. But I am out of breath a lot. I have not gone to the pilates studio in weeks because I don't drive very much and I don't think I could make it through a 60 minute class. I am very tired and don't cook at all (hint, hint, we need meals please!!) I am glad we went to Paris when we did because the Lord blessed me with stamina for that trip and 2012 ushered in a new phase of health for me. I am ok with whatever he has in store for me though.
The girls, on the other hand, are not ok with this. They had a bit of a "breakthrough" in their grief therapy the other day with both of them crying.... I knew they were holding their emotions in. I think they've noticed how slow I've gotten and they realize that they may lose their mom. Very sad.... all I can do is talk to them about it and let them attach themselves to me. Hope in particular wants to be with me all the time when we are home. Ugghh. Prayers please for our girls to find God in all of this mess. I fear 2012 may be a tough year for the Hosfords.
So that's what is going on with us... hope you all are well!
Love,
Sofie
I started the Vidaza treatment January 16 for the MDS. This is supposed to raise my blood counts, in the long run, and reduce my dependence on blood transfusions. Of course, in the short run, it reduces my blood counts even more. (?) and has a whole host of other fun side effects.
I, with the help of my doctors at UNC, arranged to get the Vidaza administered here in Leland by Dr. Arb since the treatment is supposed to be M-F one week and M-Tues the following week. I won't go into the difficulty of doing that (can you say red tape!), since I used to see Dr. Kotz at Hanover Medical in Wilmington, but anyway..... I am now a patient of Dr. Arb for local treatments like this.
The doctors kind of minimized the side effects of Vidaza. Seems like that always happens.... I started with sub-cutaneous injection of this med. I have one arm and a belly to use as a pin cushion for this fun. Two shots per day. I got the shots in my left arm (can't use the right b/c of lymph node removal in 2007) and then did 2 days in my belly, for a total of 4 shots there. My belly turned black and blue, with red circles around it; it was disgusting!!!! Anyway, after that I decided to go to the infused Vidaza that goes through my port. Of course, that causes more nausea (I already had a lot of nausea). So, I made it 5 days and then asked Dr. Foster if we could call it done. He said yes, thank God! I felt just as bad as I did after the Adriamycin that caused this blood problem in the first place. Did I mention I hate chemo?!
I am supposed to do the Vidaza 3-4 cycles to make sure it works. But life goes on, right? Geoff and I got tickets to see Elton John at the RBC center March 16 and I will NOT be doing Vidaza that week even though I am currently scheduled to do so. I'd be puking the whole ride up to Raleigh otherwise! So we may have to be a little bit flexible with the Vidaza scheduling. I have mixed feelings about bothering with this to begin with.....no treatment has worked for me yet, you know?
So, I went to get my blood checked last Friday the 27th. Geoff and the girls were in the car headed for Maryland for Hope's rhythmic gymnastics meet. Of course, I needed a blood and platelet transfusion. My platelet count was 7!!!! It's supposed to be around 140 but has lately been 25 ish. At 7, I was at risk of bleeding to death internally, around the brain, or in the gums. Thank goodness, the only SE I saw was red dots all over my legs.
Anyhoo, I drove myself to the hospital for a transfusion, thinking I'd be home that night. Instead, I got admitted overnight and they didn't finish the transfusion until after 3 am!!! I can't say it was restful, because every hour or so they had to change bags or check vitals or whatever. Anyway, I got a platelet as well as a blood transfusion. Unfortunately, the platelets only last 3-4 days, but I should be good to go despite that for a couple of weeks (fingers crossed!)
So, my life has become fairly slow. I spend a lot of time in our new (awesome) Tempur Pedic bed with the adjustable mattress!!! (I was so uncomfortable at the hospitable in the lousy bed it wasn't even funny). Now, I can raise the mattress to read or watch tv, or whatever and my back has been loving it.
I walk the dog about a mile most days. I try to do yoga or pilates for about 30 minutes a few times a week. But I am out of breath a lot. I have not gone to the pilates studio in weeks because I don't drive very much and I don't think I could make it through a 60 minute class. I am very tired and don't cook at all (hint, hint, we need meals please!!) I am glad we went to Paris when we did because the Lord blessed me with stamina for that trip and 2012 ushered in a new phase of health for me. I am ok with whatever he has in store for me though.
The girls, on the other hand, are not ok with this. They had a bit of a "breakthrough" in their grief therapy the other day with both of them crying.... I knew they were holding their emotions in. I think they've noticed how slow I've gotten and they realize that they may lose their mom. Very sad.... all I can do is talk to them about it and let them attach themselves to me. Hope in particular wants to be with me all the time when we are home. Ugghh. Prayers please for our girls to find God in all of this mess. I fear 2012 may be a tough year for the Hosfords.
So that's what is going on with us... hope you all are well!
Love,
Sofie
Monday, January 2, 2012
Hello 2012!!!!
I hope that everyone had a wonderful Christmas. We certainly did. I am so grateful to my sister in law Amy for allowing me to sleep and/or rest in her guest room day after blissful day. I had a doctor's appointment at Dana Farber on Dec 22. I was supposed to have doc appointments in Chapel Hill on Dec 16, but since we just flew back from Paris on Dec 13, got in late and were seriously jet lagged, I just could not handle the 6 hour (round trip) drive. Anyhow, considering the 10 mile drive to Dana Farber and having seen Dr. Winer in the past, we chose that option. It was a good thing we did too-- my blood counts were horrific. Hemoglobin was below 8, platelets were 24 (having dropped from 45 on Dec 5) and my neutrophil and white blood cell counts remain low. Long story long, I received my first platelet transfusion, which lasts only 4-5 days, and a whopping 3 units of blood. Nevertheless, the anemia left me tired over the break. I am so thankful that (knock on wood) I have remained infection free with no immune system.
However, Paris was awesome!!! God blessed me with sufficient energy to survive long plane rides, hours in airports, and a husband who loves to use his feet as the sole means of transportation while on vacation. (truth be told, I didn't object). We saw: the Eiffel Tower at day and nighttime, Notre Dame, the Louvre, the Rodin museum, Sacre Coeur, the Church of Saint Louis, the church St. Eustache, the church St. Sulpice, the church St. Germaine de Pres, Versailles, as well as numerous cafes, restaurants, and stores. I must admit -- seeing Paris on foot allows you to appreciate the architecture and the beauty of EVERYTHING Paris. They don't even build ugly bridges!! The only sight we couldn't get in to see was the Catacombs (it closed literally in our faces).
Back to reality. I am hanging the carrot of further travel to keep me marching on. My dear friend Wendy, who watched our girls while we went to Paris, and I talked about a late spring trip back to Napa. Not too much for wine tasting (I barely drink wine these days) but for relaxation and spa treatments, and enjoying the Milliken Creek inn. We will see. First, I have to pay some bills. Oh yeah, and start that decitabine treatment for my new cancer. Oh yeah, that. It will involve 5 consecutive days out of every 28 days, for 3-4 months. I think I will get treated here but keep my docs in chapel hill. Do you know my oncologist and hematologist in chapel hill each spend about 30 minutes with me, per appointment? That's just talking time!! Those are some docs with good bedside manner! That's why we make the drive.
This is long. I will post photos later. God bless you all and I hope the post-holiday hangover doesn't hurt too much!
Love,
Sofie
However, Paris was awesome!!! God blessed me with sufficient energy to survive long plane rides, hours in airports, and a husband who loves to use his feet as the sole means of transportation while on vacation. (truth be told, I didn't object). We saw: the Eiffel Tower at day and nighttime, Notre Dame, the Louvre, the Rodin museum, Sacre Coeur, the Church of Saint Louis, the church St. Eustache, the church St. Sulpice, the church St. Germaine de Pres, Versailles, as well as numerous cafes, restaurants, and stores. I must admit -- seeing Paris on foot allows you to appreciate the architecture and the beauty of EVERYTHING Paris. They don't even build ugly bridges!! The only sight we couldn't get in to see was the Catacombs (it closed literally in our faces).
Back to reality. I am hanging the carrot of further travel to keep me marching on. My dear friend Wendy, who watched our girls while we went to Paris, and I talked about a late spring trip back to Napa. Not too much for wine tasting (I barely drink wine these days) but for relaxation and spa treatments, and enjoying the Milliken Creek inn. We will see. First, I have to pay some bills. Oh yeah, and start that decitabine treatment for my new cancer. Oh yeah, that. It will involve 5 consecutive days out of every 28 days, for 3-4 months. I think I will get treated here but keep my docs in chapel hill. Do you know my oncologist and hematologist in chapel hill each spend about 30 minutes with me, per appointment? That's just talking time!! Those are some docs with good bedside manner! That's why we make the drive.
This is long. I will post photos later. God bless you all and I hope the post-holiday hangover doesn't hurt too much!
Love,
Sofie
Saturday, November 5, 2011
A Rare Bird
So Geoff and I met with the hematologist oncologist last week. Whew. What a day.
I do indeed have myeloid dysplasia syndrome (MDS) which is a pre-leukemia NEW primary cancer caused by my chemotherapy treatment in 2007. I was one of the less than 1% of people treated with adriamycin and cytoxin chemotherapies to develop MDS and had an even smaller chance of this occurring given my relatively young age. Lucky me! The chemo basically caused me to develop a chromosomal abnormality such that I am now missing a chromosome. It is called 7 q deletion syndrome and is one of the more serious forms of MDS (of course! As if it would be any other way!) My oncologist said at one point that I continue to perplex even the fine medical minds at UNCCH. How cool!
Dr. Foster, the hematologist oncologist I will be seeing, gave us "the talk." Upon receiving my consent, he advised that the prognosis for this disease is not good even by itself (median survival of 14 months) without having late-stage breast cancer but is obviously complicated by the combination of the two cancers. We asked Dr. Foster if it would be ok for me to travel and he said, very forcefully, "GO!!" So go we will!!! I took that to mean "go while you still can."
The family is headed to Amelia Island again this year to the Ritz Carlton Resort, for Thanksgiving food and time with Santa for the girls. They have a large Christmas tree lighting outside and hayrides and photos with Santa, etc. A very fun, family-oriented time for all. And no cooking!
Then, in early December, Geoff and I will scoot off to Paris for a week by ourselves. That will empty my bucket for now. When we get back I can start dreaming about trips to Barcelona or Scotland or something!! Then, for Christmas, we are due to go to Boston as a family to hang out with Geoff's mom and sisters and their kids.
After the trips, I will start treatment :( It will be an infusion treatment 7 days out of every month, which is why I cannot start this before traveling so much.
The hope is that the treatment, as well as the blood transfusions I will receive twice a month and before each big trip, will help my blood counts go up. My platelets, white and red blood cells, and hemoglobin counts have been really low and continue to drop. The transfusions help me to feel better by increasing my red blood cell and hemoglobin counts. The platelet issues require separate platelet transfusions and are more complicated and contraindicated even.
Not to be morose, but the risks I face with the low blood counts are infection (serious hospitalization kind of infection) from low WBC counts and my body's inability to fight off infection, and bleeding to death from the low platelet counts (especially internal bleeding). Then, of course, I still have the breast cancer issues going on with bone and liver metastases which present their own problems.
So, bright news, eh? I just had a blood transfusion and that did give me more energy for life :) Obviously, the situation is serious and I am getting my affairs in order, so to speak. But we still pray for a miracle every day and believe in it!!!!!
Thank you for your continued prayers! We still would love to have food brought to our house despite the food complications, if possible. It is so hard to cook right now.
I do not know what God's plan is for us but I believe with my heart and my soul that he has a reason for my illnesses. I have surrendered my life to Christ and am not afraid of what the future holds for me or my family because I know that even with me gone the girls still have God to hold onto. My hope is that, through this ordeal, the girls and Geoff will become closer to Jesus than they otherwise would. If that happens, isn't all of this somehow for the best? I know, that's a tough jump given the girls' young ages but they have to hold onto someone through this tough time.
Well, off to do something else. Thanks for listening. Sorry this is so long.
Love to you all,
Sofie
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
I do indeed have myeloid dysplasia syndrome (MDS) which is a pre-leukemia NEW primary cancer caused by my chemotherapy treatment in 2007. I was one of the less than 1% of people treated with adriamycin and cytoxin chemotherapies to develop MDS and had an even smaller chance of this occurring given my relatively young age. Lucky me! The chemo basically caused me to develop a chromosomal abnormality such that I am now missing a chromosome. It is called 7 q deletion syndrome and is one of the more serious forms of MDS (of course! As if it would be any other way!) My oncologist said at one point that I continue to perplex even the fine medical minds at UNCCH. How cool!
Dr. Foster, the hematologist oncologist I will be seeing, gave us "the talk." Upon receiving my consent, he advised that the prognosis for this disease is not good even by itself (median survival of 14 months) without having late-stage breast cancer but is obviously complicated by the combination of the two cancers. We asked Dr. Foster if it would be ok for me to travel and he said, very forcefully, "GO!!" So go we will!!! I took that to mean "go while you still can."
The family is headed to Amelia Island again this year to the Ritz Carlton Resort, for Thanksgiving food and time with Santa for the girls. They have a large Christmas tree lighting outside and hayrides and photos with Santa, etc. A very fun, family-oriented time for all. And no cooking!
Then, in early December, Geoff and I will scoot off to Paris for a week by ourselves. That will empty my bucket for now. When we get back I can start dreaming about trips to Barcelona or Scotland or something!! Then, for Christmas, we are due to go to Boston as a family to hang out with Geoff's mom and sisters and their kids.
After the trips, I will start treatment :( It will be an infusion treatment 7 days out of every month, which is why I cannot start this before traveling so much.
The hope is that the treatment, as well as the blood transfusions I will receive twice a month and before each big trip, will help my blood counts go up. My platelets, white and red blood cells, and hemoglobin counts have been really low and continue to drop. The transfusions help me to feel better by increasing my red blood cell and hemoglobin counts. The platelet issues require separate platelet transfusions and are more complicated and contraindicated even.
Not to be morose, but the risks I face with the low blood counts are infection (serious hospitalization kind of infection) from low WBC counts and my body's inability to fight off infection, and bleeding to death from the low platelet counts (especially internal bleeding). Then, of course, I still have the breast cancer issues going on with bone and liver metastases which present their own problems.
So, bright news, eh? I just had a blood transfusion and that did give me more energy for life :) Obviously, the situation is serious and I am getting my affairs in order, so to speak. But we still pray for a miracle every day and believe in it!!!!!
Thank you for your continued prayers! We still would love to have food brought to our house despite the food complications, if possible. It is so hard to cook right now.
I do not know what God's plan is for us but I believe with my heart and my soul that he has a reason for my illnesses. I have surrendered my life to Christ and am not afraid of what the future holds for me or my family because I know that even with me gone the girls still have God to hold onto. My hope is that, through this ordeal, the girls and Geoff will become closer to Jesus than they otherwise would. If that happens, isn't all of this somehow for the best? I know, that's a tough jump given the girls' young ages but they have to hold onto someone through this tough time.
Well, off to do something else. Thanks for listening. Sorry this is so long.
Love to you all,
Sofie
For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11
Friday, October 28, 2011
Bone Marrow Biopsy
Well, I'm a bit short on time right now but I wanted to update everyone about my bone marrow biopsy from the 21st. Bottom line is the pathology report still is not in. But the docs did genetic testing on the cells they were able to get and discovered that I am missing a chromosome. It is called 7 q deletion syndrome. I know right? Weird.
Bottom line, I am one of the lucky less than 1% of people who take the chemotherapy regimen (taxotere/adriamycin/cytoxin) and develop acute leukemia as a primary new cancer. Goody for me. It supposedly only occurs in women over 60. Yeah for me again. I believe it is called secondary acute myeloid leukemia when it occurs as a result of chemotherapy and/or radiation treatments.
I meet with a hematologist next week because my oncologist said that he did not feel comfortable dealing with this type of problem (although he will continue to treat me) and that I need a blood specialist. This explains why my white blood cell, red blood cell, hemoglobin, and platelet counts have been so low and continue to drop.
This is not good news, of course. We will know more after talking to the hematologist but I know how my body feels and it is not good. I am probably not up for any aggressive treatments at this point -- I just want to be comfortable. I am otherwise (hah!) healthy and that has to mean something.
We are not going to tell the girls until after meeting with the hematologist next week. No sense talking about something we don't really know anything about.
I'm off to the beach for the evening! I hope that everyone has a wonderful weekend and a great Halloween! I'm supposed to be the emerald witch. We'll see what my energy is like.
I appreciate continued prayers for me but please also pray for Geoff and the girls. They have a tougher road ahead than I do, I expect.
Love,
Sofie
Bottom line, I am one of the lucky less than 1% of people who take the chemotherapy regimen (taxotere/adriamycin/cytoxin) and develop acute leukemia as a primary new cancer. Goody for me. It supposedly only occurs in women over 60. Yeah for me again. I believe it is called secondary acute myeloid leukemia when it occurs as a result of chemotherapy and/or radiation treatments.
I meet with a hematologist next week because my oncologist said that he did not feel comfortable dealing with this type of problem (although he will continue to treat me) and that I need a blood specialist. This explains why my white blood cell, red blood cell, hemoglobin, and platelet counts have been so low and continue to drop.
This is not good news, of course. We will know more after talking to the hematologist but I know how my body feels and it is not good. I am probably not up for any aggressive treatments at this point -- I just want to be comfortable. I am otherwise (hah!) healthy and that has to mean something.
We are not going to tell the girls until after meeting with the hematologist next week. No sense talking about something we don't really know anything about.
I'm off to the beach for the evening! I hope that everyone has a wonderful weekend and a great Halloween! I'm supposed to be the emerald witch. We'll see what my energy is like.
I appreciate continued prayers for me but please also pray for Geoff and the girls. They have a tougher road ahead than I do, I expect.
Love,
Sofie
Thursday, October 13, 2011
Update from yesterday's test
Well I figured I'd better not make people wait too long for an update following my doctor's appointment in Chapel Hill yesterday. The blood test showed that my platelets went up to 65 from 58 but, considering the low point is supposed to be around 150, that's still very low. White blood cell count was 1.7 and the red blood cell count and hemoglobin both went down again, further explaining my present fatigue and "loopiness". So...
On the 21st I will have a bone marrow biopsy (supposed to be fun, they stick a needle into your pelvis bone) to determine if 1) a new primary cancer, like leukemia or some other blood cancer, has developed; or 2) I do indeed have metastases from the breast cancer or 3) I don't have bone marrow cancer issues at all but some other problem bringing my counts down. Doc believes 2 is most likely. The benefit to knowing more about what's going on in my bone marrow is that it theoretically brings in other treatment possibilities. Dr. Muss is going to talk to the blood oncology docs at UNCCH between now and my next appt with him. Unfortunately, at this point, there are not many, if any, treatment options that are likely to improve my health picture. As I mentioned before, the docs will not give me chemo with blood counts this low because almost any chemo will suppress my bone marrow and bring the counts down even more. The only chemo that does not suppress the marrow is Xeloda which I have already crossed off my list by trying it in February 2010 and having Dr. Muss and I determine that it did not work for me.
Doctor Muss also said that my body has responded to all of my treatments the way women's bodies used to respond to BC in the olden days when they did not have any treatments. In other words, everything has failed! Boy that was uplifting.
So continued prayers please. The doc was shocked that I have not gotten infected with anything while having a WBC count at 1.7. He said I must have "reserves" keeping me from getting sick. This whole picture is scary to me because my father's blood counts started tanking right before he ended up in the ICU with complications from stage IV lymphoma last year. Damn this cancer!!!!
More sad news -- the traveling Hosfords canceled our European cruise for next year :( Money is tight with me not working and, to be frank, if I'm not around in July 2012 I am not sure Geoff and the girls would want to go on that trip (planned entirely by me) without me. I'm supposed to go to a conference in Baltimore at the end of this month put on by Johns Hopkins about new treatments for MBC but we will see. Probably not the best thing to get on a plane with these counts. I feel like the boy in the bubble movie from the 70s.....
I am living by this gem from Proverbs 3:5-6 Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all that you do and he will show you which path to take. And also Romans 8:28: And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
I keep leaning on the same Bible verses because I cannot memorize very many other ones ;) I do know that all of this health mess fits into God's big movie epic somehow. I don't have Jennifer Anniston's part but maybe the part of some extra on the set. I don't know what that overall plan is but I guess I don't have to know.
I'd be ok with all of this if it wasn't for Geoff and the girls. Hope asked me last week why God hadn't healed me when we've been praying for complete healing of my body for years now. Now isn't that a tough question to answer. Ugghh.
Love and peace,
Sofie
Tuesday, October 4, 2011
Blood issues? Are you kidding?
So it's about time I updated everyone with the latest health news. Ugghh. I went to Chapel Hill September 28th expecting to receive another samarium injection to help with my back pain. Unfortunately, my blood work, which has always been described as "fine" just like I look "fine" [how can you be sick, you look fine! I hear that so often] is no longer fine.
Inexplicably, my platelets, white blood cell count, hemoglobin, etc. has been falling. The platelet count, specifically, is in free fall. It's supposed to be somewhere between 150-440 and was 58, last time they checked. My nuclear medicine doctor was willing to give a smaller samarium dose if the platelet count was somewhere near 100 (it was 89 one week which was low but do-able) but not with it at 58. BTW, your body's platelets help to cause blood clotting when you bleed. If the platelet count gets down in the tens and twenties, my oncologist said, you can start spontaneously bleeding out of your nose and gums and it won't stop. You can bleed to death, essentially.
What caused my platelets to drop? We don't know. I was told on the 28th, when my platelets were down at 58, that I probably have metastases in my bone marrow as well as my bones and my liver. With bone marrow mets, your body has a hard time getting your blood counts up (platelets, WBC, hemoglobin, etc) because there are not enough normal (non-cancerous) cells in your bone marrow making good blood. As a result, you are not eligible for most chemotherapies (which suppress bone marrow so you have to have good blood counts to begin with).
Essentially, we are worried that my platelet counts will keep going down. I am tired these days, and I mean tired. I will do one activity a day, such as walking the dog or maybe going to pilates class, and then I return to bed for the rest of the day. And it is HARD to get through a pilates class because I am exhausted by 15 minutes into the class. But anyone who knows me knows that when I give that up I am in trouble because that is my social life! Yesterday's pilates and dog walk caused me to nap for about 4 hours and spend the rest of the day in my bed! So this makes the tired of 6 months ago seem like a walk in the park.
So, anyway, please pray that my blood counts improve. We cannot even fight these new mets with chemo until my blood recovers. Although I am at peace with my disease and the possibility of going to meet my maker (there is no cancer in heaven :) woo hoo!!!) I know that my children and husband need me here. So please continue to pray -- I know many of you already are.
I go back to Chapel Hill October 12 and will have my blood tested again. Let's hope the numbers go up! I will try and report either way after that appointment.
Love,
Sofie
Inexplicably, my platelets, white blood cell count, hemoglobin, etc. has been falling. The platelet count, specifically, is in free fall. It's supposed to be somewhere between 150-440 and was 58, last time they checked. My nuclear medicine doctor was willing to give a smaller samarium dose if the platelet count was somewhere near 100 (it was 89 one week which was low but do-able) but not with it at 58. BTW, your body's platelets help to cause blood clotting when you bleed. If the platelet count gets down in the tens and twenties, my oncologist said, you can start spontaneously bleeding out of your nose and gums and it won't stop. You can bleed to death, essentially.
What caused my platelets to drop? We don't know. I was told on the 28th, when my platelets were down at 58, that I probably have metastases in my bone marrow as well as my bones and my liver. With bone marrow mets, your body has a hard time getting your blood counts up (platelets, WBC, hemoglobin, etc) because there are not enough normal (non-cancerous) cells in your bone marrow making good blood. As a result, you are not eligible for most chemotherapies (which suppress bone marrow so you have to have good blood counts to begin with).
Essentially, we are worried that my platelet counts will keep going down. I am tired these days, and I mean tired. I will do one activity a day, such as walking the dog or maybe going to pilates class, and then I return to bed for the rest of the day. And it is HARD to get through a pilates class because I am exhausted by 15 minutes into the class. But anyone who knows me knows that when I give that up I am in trouble because that is my social life! Yesterday's pilates and dog walk caused me to nap for about 4 hours and spend the rest of the day in my bed! So this makes the tired of 6 months ago seem like a walk in the park.
So, anyway, please pray that my blood counts improve. We cannot even fight these new mets with chemo until my blood recovers. Although I am at peace with my disease and the possibility of going to meet my maker (there is no cancer in heaven :) woo hoo!!!) I know that my children and husband need me here. So please continue to pray -- I know many of you already are.
I go back to Chapel Hill October 12 and will have my blood tested again. Let's hope the numbers go up! I will try and report either way after that appointment.
Love,
Sofie
Wednesday, August 17, 2011
Latest Visit to Scanland
Uggghhh. I hate cancer. I am sitting here in Chapel Hill at the end of a three day scan marathon. Monday consisted of 3 visits to the bone scanner with an add-on visit to the oncologist squeezed in because I was having problems with abdominal pain, bloating, and just generally not feeling well. I was supposed to get a samarium treatment this week. That got cancelled because my nuclear medicine doc feared "complications."
Tuesday was even more fun. I got a CT scan following morning fasting, of my entire body. That was followed by a visit to the MRI for a brain MRI. At least with that, when I fall asleep and twitch, my head can't move anywhere because you're squeezed in like Hannibel Lector. Every day I have been walking to and from the hospital because I am carless (for the benefit of all of the citizens of Chapel Hill!!!!).
Today,I had a visit with my pain medicine provider and my oncologist to go over the results of the scans. The bad news: It looks like I now am the not so proud owner of a bunch of small liver mets. They should not be causing me a lot of problems right now but treatment is limited -- when there is more than one like that, treatment usually involves hormonals or more chemo (yuck). Oh, and the bone mets have grown both in number and in size. So, off the faslodex and back on tamoxifen. At least I will not have any more shots in the rear.
Funny, I was all by myself today (not generally advised when you suspect you might receive bad news but unavoidable this week) and I really did not get upset to hear the news about the liver mets. I guess when the news is fairly predictable it is hard to be surprised or sad.
Coincidentally, today is my FOUR YEAR CANCERVERSARY!!!!!! That means it is 4 years since I was first diagnosed with this blasted disease!!!! So, no matter what, I've made it 4 years. Cancer can just stick it. I will have to celebrate with the family when I get home!!
God is good and somehow, this is part of his plan. We just do not know what yet.............
Love to you all!
Sofie
Tuesday was even more fun. I got a CT scan following morning fasting, of my entire body. That was followed by a visit to the MRI for a brain MRI. At least with that, when I fall asleep and twitch, my head can't move anywhere because you're squeezed in like Hannibel Lector. Every day I have been walking to and from the hospital because I am carless (for the benefit of all of the citizens of Chapel Hill!!!!).
Today,I had a visit with my pain medicine provider and my oncologist to go over the results of the scans. The bad news: It looks like I now am the not so proud owner of a bunch of small liver mets. They should not be causing me a lot of problems right now but treatment is limited -- when there is more than one like that, treatment usually involves hormonals or more chemo (yuck). Oh, and the bone mets have grown both in number and in size. So, off the faslodex and back on tamoxifen. At least I will not have any more shots in the rear.
Funny, I was all by myself today (not generally advised when you suspect you might receive bad news but unavoidable this week) and I really did not get upset to hear the news about the liver mets. I guess when the news is fairly predictable it is hard to be surprised or sad.
Coincidentally, today is my FOUR YEAR CANCERVERSARY!!!!!! That means it is 4 years since I was first diagnosed with this blasted disease!!!! So, no matter what, I've made it 4 years. Cancer can just stick it. I will have to celebrate with the family when I get home!!
God is good and somehow, this is part of his plan. We just do not know what yet.............
Love to you all!
Sofie
Tuesday, July 12, 2011
Sleepy Summer
Happy Summer everyone!
So sorry I have failed to keep my updates coming. Healthwise, over the past few months, my back pain got better for several weeks following my shot of samarium (Quadramet -- the radioactive infusion I got) and now it is in the process of getting worse :( The side effect of the infusion was that it increased my fatigue. Now, I have increased back pain again and I am getting more and more tired as well. Can you say afternoon naps that last 4 hours????
I guess I should be happy, right? I'm not in the hospital or anything like that. The girls are out of school and presently are only doing swim lessons (and gymnastics of course) for two weeks. We spent a lovely, leisurely week at Bald Head Island last week. Ahhhh.... Other than that, it's been daily gymnastics team practices and whatever errands we need to run. The girls have been very patient considering we have not done a lot of fun activities during the work week. Geoff is very good about running them to the pool, etc. every weekend to burn off their energy. And we did get bikes because Hadley finally learned to ride her bike :) I've not ridden mine too much but it is fun when I do!
I will be having another shot of samarium (again, radiation) in a few weeks in Chapel Hill. It will be sometime after I go there August 3 and 4. The real risk with these shots is it increases my risk of infection. But I don't care because the back pain is worse than everything.
So, please don't worry when you don't hear from me! Easier said than done, I know. But I promise to have Geoff post on here if something bad occurs to me... that's what this blog is for, after all! In the meantime, the more I can avoid thinking about cancer, the better! Enjoy the sunshine! (we have to get one benefit from this drought, after all!)
Love,
Sofie
So sorry I have failed to keep my updates coming. Healthwise, over the past few months, my back pain got better for several weeks following my shot of samarium (Quadramet -- the radioactive infusion I got) and now it is in the process of getting worse :( The side effect of the infusion was that it increased my fatigue. Now, I have increased back pain again and I am getting more and more tired as well. Can you say afternoon naps that last 4 hours????
I guess I should be happy, right? I'm not in the hospital or anything like that. The girls are out of school and presently are only doing swim lessons (and gymnastics of course) for two weeks. We spent a lovely, leisurely week at Bald Head Island last week. Ahhhh.... Other than that, it's been daily gymnastics team practices and whatever errands we need to run. The girls have been very patient considering we have not done a lot of fun activities during the work week. Geoff is very good about running them to the pool, etc. every weekend to burn off their energy. And we did get bikes because Hadley finally learned to ride her bike :) I've not ridden mine too much but it is fun when I do!
I will be having another shot of samarium (again, radiation) in a few weeks in Chapel Hill. It will be sometime after I go there August 3 and 4. The real risk with these shots is it increases my risk of infection. But I don't care because the back pain is worse than everything.
So, please don't worry when you don't hear from me! Easier said than done, I know. But I promise to have Geoff post on here if something bad occurs to me... that's what this blog is for, after all! In the meantime, the more I can avoid thinking about cancer, the better! Enjoy the sunshine! (we have to get one benefit from this drought, after all!)
Love,
Sofie
Monday, May 2, 2011
The Beast Claims Another Angel
Hi everyone,
Happy Monday! We had a bit of a rough weekend. A woman who we used to work with at the courthouse in Wilmington lost her 26-year old daughter last Thursday to breast cancer. While I did not really know this young woman, I had reached out to her and spoken to her mother about her at length. I reached out to her and tried to get her to join our "pink posse" group of BC survivors. We also ran into her at UNC Chapel Hill Hospital when we both had doctors' appointments. What bothers me so much is that I had a lot in common with this young woman.
I don't know about the past few months but last I heard she "only" had bone mets (no organ involvement) and mets in one lymph node on her chest. This woman was stage IV at diagnosis because they found the bone mets when the docs also found cancer in one of her breasts. She did not even have as many bone mets as I do and seemed to be doing fairly well (based upon her blog) up until recently. She even managed to work at a local restaurant and earn a college degree at ECU through all of this.
I felt drawn to go to the funeral despite the fact that we did not personally know this young lady. The church was packed to overflow as hundreds of people attended her funeral. While exiting the church following the wonderful service, her mother walked up to me (and not any of the other dozens of people standing near the exit door) put her arms around me and proceeded to break down into tears. I felt so horrible for this mother who spent the past 3 years taking her daughter to all kinds of appointments and procedures. A child is not supposed to precede their parent in death! It was so sad. I have found some comfort in knowing that she is in a better place now. This young lady struggled a great deal with being in her 20's and having stage IV breast cancer. While her friends got married, graduated from college, and had babies, she went to see her oncologist and got Lupron shots (to shut down her ovarian function). While her friends dated men she wondered what kind of a man would want to date a 26 year old woman who has had a mastectomy. Ugghh.
All of this made me feel fortunate to have my husband and children but of course also scared that I could go that fast. And of course, I have a lot more responsibility BECAUSE I have 2 girls. I don't usually think about statistics, but they say that about 20% of stage IV breast cancer patients live 5 years. I'm closing in on 4 years in August 2011. I KNOW I can beat the odds but I also know that I may not. It is all in God's hands and I GLADLY surrender this stress to him. It's too much for me to handle. I recall the Apostle Paul in 2 Corinthians (forget exactly where) asking God to remove the "thorn" [illness or ailment] from his side. Lord, I pray for you to remove the thorn from my side. Heal my pain. Give me the energy to care for our children and my husband. That is all I ask. Please take good care of our Angel Kim in heaven. And ease the burden in her mother Vicki's heart -- let her feel the peace and comfort that only you can bring. In Christ's name,
Amen.
Happy Monday! We had a bit of a rough weekend. A woman who we used to work with at the courthouse in Wilmington lost her 26-year old daughter last Thursday to breast cancer. While I did not really know this young woman, I had reached out to her and spoken to her mother about her at length. I reached out to her and tried to get her to join our "pink posse" group of BC survivors. We also ran into her at UNC Chapel Hill Hospital when we both had doctors' appointments. What bothers me so much is that I had a lot in common with this young woman.
I don't know about the past few months but last I heard she "only" had bone mets (no organ involvement) and mets in one lymph node on her chest. This woman was stage IV at diagnosis because they found the bone mets when the docs also found cancer in one of her breasts. She did not even have as many bone mets as I do and seemed to be doing fairly well (based upon her blog) up until recently. She even managed to work at a local restaurant and earn a college degree at ECU through all of this.
I felt drawn to go to the funeral despite the fact that we did not personally know this young lady. The church was packed to overflow as hundreds of people attended her funeral. While exiting the church following the wonderful service, her mother walked up to me (and not any of the other dozens of people standing near the exit door) put her arms around me and proceeded to break down into tears. I felt so horrible for this mother who spent the past 3 years taking her daughter to all kinds of appointments and procedures. A child is not supposed to precede their parent in death! It was so sad. I have found some comfort in knowing that she is in a better place now. This young lady struggled a great deal with being in her 20's and having stage IV breast cancer. While her friends got married, graduated from college, and had babies, she went to see her oncologist and got Lupron shots (to shut down her ovarian function). While her friends dated men she wondered what kind of a man would want to date a 26 year old woman who has had a mastectomy. Ugghh.
All of this made me feel fortunate to have my husband and children but of course also scared that I could go that fast. And of course, I have a lot more responsibility BECAUSE I have 2 girls. I don't usually think about statistics, but they say that about 20% of stage IV breast cancer patients live 5 years. I'm closing in on 4 years in August 2011. I KNOW I can beat the odds but I also know that I may not. It is all in God's hands and I GLADLY surrender this stress to him. It's too much for me to handle. I recall the Apostle Paul in 2 Corinthians (forget exactly where) asking God to remove the "thorn" [illness or ailment] from his side. Lord, I pray for you to remove the thorn from my side. Heal my pain. Give me the energy to care for our children and my husband. That is all I ask. Please take good care of our Angel Kim in heaven. And ease the burden in her mother Vicki's heart -- let her feel the peace and comfort that only you can bring. In Christ's name,
Amen.
Monday, April 4, 2011
Recovery
Sorry so long, no post. It's been a rough road back from chemo and, unlike my chemo experience in 2007, I won't bounce back to an energetic, pain-free Sofie. But at least I am feeling somewhat more awake at 8 pm than I was during chemo. So that's an improvement. My pain issues continue to plague me and are not well-managed with all the pain meds I am taking so that is my biggest problem right now. My oncologist and I have decided to try Quadramet, which is a radioactive infusion given that sends radiation-type treatment through your bloodstream to your bones. It is supposed to help relieve bone pain caused by the metastases and is kind of like a whole body radiation without going under the radiation machine. We'll see if it helps, hopefully! If it does not provide relief, then we know that most of my pain is tissue or nerve related and we'll have to figure something else out.
In the meantime, life goes on, right? Spring is here :), the kids are busy (as usual), and it's about beach time which is so exciting! Geoff and I are going to have an overnight in downtown Wilmington in a couple of weeks (to try and make up for our brief stay at the Graystone Inn last year that ended up with me in the hospital!) Between that and our trips to Oak Island to get the condo ready for the summer we have many blessings to focus on.... and distract us from the beast that is my cancer.
Speaking of, our pastor Mike and Hugo from PC3 came to pray with Geoff and I last week. That was very nice... I appreciate any and all prayers and continue to believe that a miracle can happen! If it does not, I am sure that I am part of some plan of God's that I just do not know about yet. Either way, all I can do is make the best of it and move on.
Happy Spring to all!
Sofie
In the meantime, life goes on, right? Spring is here :), the kids are busy (as usual), and it's about beach time which is so exciting! Geoff and I are going to have an overnight in downtown Wilmington in a couple of weeks (to try and make up for our brief stay at the Graystone Inn last year that ended up with me in the hospital!) Between that and our trips to Oak Island to get the condo ready for the summer we have many blessings to focus on.... and distract us from the beast that is my cancer.
Speaking of, our pastor Mike and Hugo from PC3 came to pray with Geoff and I last week. That was very nice... I appreciate any and all prayers and continue to believe that a miracle can happen! If it does not, I am sure that I am part of some plan of God's that I just do not know about yet. Either way, all I can do is make the best of it and move on.
Happy Spring to all!
Sofie
Tuesday, March 1, 2011
Pain
Sorry for not posting for so long. Suffice it to say, I've been in a LOT of pain lately. Fortunately, I got the whole nausea/chemo thing under control by begging for Emend which is a fantastic, but expensive, anti-nausea drug. I also finally got Blue Cross to approve one of my pain meds, Fentora, which is about $6000 per month at my dose (for insurance to pay, not me!).
I don't know what happened to increase the pain. I went to some legal CLEs in a couple of weeks, sitting in chairs. Then we drove to Simpsonville, SC for our oldest daughter's gymnastics meet. Lots of time in the car.
I am to the point now where it's absolutely excruciating to sit in any chair for any length of time. Even to just drive across town. So I cancelled my trip to Orlando for the Young Survivors' breast cancer conference because I figured I'd just be in the hotel room anyway. It sucks.
On a high note, I joined a new ladies small group from my church that is awesome! It's during the daytime so I am able to handle the time and I have energy. Unfortunately, anything after 6 pm now for me is just not doable.
I also got to kick Avastin to the curb. Clearly, all these drugs are not working and the nosebleeds and wounds not healing (all known side effects of Avastin) really got old. Won't go into all the details of what wounds did not heal.... So it's just Taxol now for 3 more weeks. Then I am done. I want my hair back. I want some energy back. I want to try and find a treatment that will HELP me with my back/pelvis pain.
Don't get me wrong, I fight and struggle through the pain. Hot yoga is a new obsession. The only problem is that I am so tired after the class that I am asleep by 8 pm. I need to find a night class because then I could just fall asleep afterward! But it is awesome! Reminds me of the olden days and the runners' high. Aggghhhh... And I still love my pilates and walking the dog. I just have to lie down a lot when I'm not being active. Which is good.
Thank you all SO MUCH for the food and the prayers!!! We have been inundated with food. I think we can safely stop by the end of this month and by April I should be back to having SOME energy. I hope. Prayers for my next treatment would be appreciated, and wisdom to my oncologist to find something that might work. God is the only one who can fix this mess.
Love you all!
I don't know what happened to increase the pain. I went to some legal CLEs in a couple of weeks, sitting in chairs. Then we drove to Simpsonville, SC for our oldest daughter's gymnastics meet. Lots of time in the car.
I am to the point now where it's absolutely excruciating to sit in any chair for any length of time. Even to just drive across town. So I cancelled my trip to Orlando for the Young Survivors' breast cancer conference because I figured I'd just be in the hotel room anyway. It sucks.
On a high note, I joined a new ladies small group from my church that is awesome! It's during the daytime so I am able to handle the time and I have energy. Unfortunately, anything after 6 pm now for me is just not doable.
I also got to kick Avastin to the curb. Clearly, all these drugs are not working and the nosebleeds and wounds not healing (all known side effects of Avastin) really got old. Won't go into all the details of what wounds did not heal.... So it's just Taxol now for 3 more weeks. Then I am done. I want my hair back. I want some energy back. I want to try and find a treatment that will HELP me with my back/pelvis pain.
Don't get me wrong, I fight and struggle through the pain. Hot yoga is a new obsession. The only problem is that I am so tired after the class that I am asleep by 8 pm. I need to find a night class because then I could just fall asleep afterward! But it is awesome! Reminds me of the olden days and the runners' high. Aggghhhh... And I still love my pilates and walking the dog. I just have to lie down a lot when I'm not being active. Which is good.
Thank you all SO MUCH for the food and the prayers!!! We have been inundated with food. I think we can safely stop by the end of this month and by April I should be back to having SOME energy. I hope. Prayers for my next treatment would be appreciated, and wisdom to my oncologist to find something that might work. God is the only one who can fix this mess.
Love you all!
Monday, January 17, 2011
Chemo Hell...
Well, it finally happened. I scooted through my first round of chemo (TAC) in 2007 pretty well. Had some nausea and fatigue. Nothing like what happened last Thursday night.
I was literally up all night vomiting. (sorry folks, this is graphic). Probably threw up 10 times. My throat got so swollen from the vomiting that only today, four days later, can I swallow without extreme pain. I have never been that sick in my life and I hope I never get that way again. What happened? I don't know.
See, when I started the Taxol/Avastin treatment, my oncologist told me that there was only a small chance of getting any nausea. I did not receive any anti nausea meds that I got in 2007, the really good expensive ones like Aloxi or Emend. I have some Zofran left over from other treatments but that could not face the big bad heaves I had Thursday night. I literally slept all night with my head in the toilet because I could not move. The next few days (until today) my head was banging all day long. Really, this is the chemo we've all heard about from the old days that makes everyone so scared to get chemo. I honestly can't believe that this low-dose Taxol/Avastin (and the Avastin is not supposed to cause ANY nausea or vomiting) would make me sicker than the high-dose Adriamycin I got a few years ago. They call that stuff the red devil because it's so bad. ANYWAY, enough talk about puke.
So, I got my head shaved last week. My lovely, dear husband got his shaved at the same time for camaraderie. He's so awesome. I've not sported my Penelope Cruz wig left. It's here and it's lovely but it needs some time with a pair of scissors and an expert at cutting wig hair. Then, I'll break it out with some cool outfit. It makes me feel like I'm 25 because the hair literally goes past the middle of my back. I've never had my hair that long! It's fun and a nice diversion from being ill.
Well folks, off to rest. Please keep those meals coming. We appreciate and love them! Just so you know, we all eat red meat! I gave up being a vegetarian in college. One week, we had about 8 chicken meals and I do NOT want to sound ungrateful, I TRULY appreciate the effort of cooking a meal because I am not cooking now. When I try to cook, I exhaust myself. I know how hard it is to shop for the food, find the recipe, blah, blah. But we can eat red meat and soups too. I know Hadley's allergies make things confusing but it's easiest to start from the ground up. Pick a main ingredient (ie meat) and add to it. Ok, I'll shut up now because I don't want to sound ungrateful. Sometimes I am too blunt.
As a last note, should be the first note, I've chosen my "one word" and it is surrender. I am going to try and surrender my life, my health, my $ issues, all of it, to God. I know that's what we're meant to do but it is easier said than done.
Love to all,
Sofie
I was literally up all night vomiting. (sorry folks, this is graphic). Probably threw up 10 times. My throat got so swollen from the vomiting that only today, four days later, can I swallow without extreme pain. I have never been that sick in my life and I hope I never get that way again. What happened? I don't know.
See, when I started the Taxol/Avastin treatment, my oncologist told me that there was only a small chance of getting any nausea. I did not receive any anti nausea meds that I got in 2007, the really good expensive ones like Aloxi or Emend. I have some Zofran left over from other treatments but that could not face the big bad heaves I had Thursday night. I literally slept all night with my head in the toilet because I could not move. The next few days (until today) my head was banging all day long. Really, this is the chemo we've all heard about from the old days that makes everyone so scared to get chemo. I honestly can't believe that this low-dose Taxol/Avastin (and the Avastin is not supposed to cause ANY nausea or vomiting) would make me sicker than the high-dose Adriamycin I got a few years ago. They call that stuff the red devil because it's so bad. ANYWAY, enough talk about puke.
So, I got my head shaved last week. My lovely, dear husband got his shaved at the same time for camaraderie. He's so awesome. I've not sported my Penelope Cruz wig left. It's here and it's lovely but it needs some time with a pair of scissors and an expert at cutting wig hair. Then, I'll break it out with some cool outfit. It makes me feel like I'm 25 because the hair literally goes past the middle of my back. I've never had my hair that long! It's fun and a nice diversion from being ill.
Well folks, off to rest. Please keep those meals coming. We appreciate and love them! Just so you know, we all eat red meat! I gave up being a vegetarian in college. One week, we had about 8 chicken meals and I do NOT want to sound ungrateful, I TRULY appreciate the effort of cooking a meal because I am not cooking now. When I try to cook, I exhaust myself. I know how hard it is to shop for the food, find the recipe, blah, blah. But we can eat red meat and soups too. I know Hadley's allergies make things confusing but it's easiest to start from the ground up. Pick a main ingredient (ie meat) and add to it. Ok, I'll shut up now because I don't want to sound ungrateful. Sometimes I am too blunt.
As a last note, should be the first note, I've chosen my "one word" and it is surrender. I am going to try and surrender my life, my health, my $ issues, all of it, to God. I know that's what we're meant to do but it is easier said than done.
Love to all,
Sofie
Sunday, January 2, 2011
Penelope Cruz moves to Magnolia Greens
In case you don't recognize me in the next few weeks, I'll be the chick that looks like Penelope Cruz walking her dog through the streets of Leland. Yeah, "that me." I had my first chemo session with Taxol/Avastin last week and it was no picnic. Nausea (that apparently I was not supposed to get), fatigue, and oh yeah, pain because I can never get my pain prescriptions filled properly due to problems with the pharmacy stocking the meds and the insurance company agreeing to pay for them. AGGH@##@%%%%!!!! So, I decided to get a new wig for the hair loss this time around to cheer myself up. I got the "Lola" wig (that's a scary name, I know) that looks to me a lot like Penelope Cruz's hair from the late 90's. So, we'll see! I bought it online so there is no telling what I'll look like!
Our holidays were good. Just now putting the decorations away, which I love because it means the craziness of the holidays is done! I've been blessed with such wonderful trips to Napa, Florida, and Asheville that I'm ready to hunker down and watch the days pass from the comfort of my life raft (bed) while watching my favorite tv. I don't expect to be up to too much activity because the treatments are weekly (every Wednesday) in Chapel Hill. I have about 3 days of recovery, a couple of days of feeling ok, and then another treatment. I will have every 4th Wednesday off. Woo hoo! So, lots of driving, lots of nausea, lots of fatigue. I'll survive. Hopefully, I'll notice an improvement in a few weeks. I'm willing to give it up to 6 months. If I don't see an improvement in my pain by then, I'm stopping.
Our office manager Gladys is coordinating help for us. We're asking for drivers to take me to Chapel Hill and back on treatment days, meals, and help getting the girls to gymnastics. Fortunately, our church has been helpful as have many of our friends who continue to amaze me with the help they are willing to provide. Our youngest daughter started competitive team gymnastics recently so her schedule is even busier. But, with God's help and that of many other people too, we'll get through this tough time.
Happy New Year to all and God bless!
Sofie
Our holidays were good. Just now putting the decorations away, which I love because it means the craziness of the holidays is done! I've been blessed with such wonderful trips to Napa, Florida, and Asheville that I'm ready to hunker down and watch the days pass from the comfort of my life raft (bed) while watching my favorite tv. I don't expect to be up to too much activity because the treatments are weekly (every Wednesday) in Chapel Hill. I have about 3 days of recovery, a couple of days of feeling ok, and then another treatment. I will have every 4th Wednesday off. Woo hoo! So, lots of driving, lots of nausea, lots of fatigue. I'll survive. Hopefully, I'll notice an improvement in a few weeks. I'm willing to give it up to 6 months. If I don't see an improvement in my pain by then, I'm stopping.
Our office manager Gladys is coordinating help for us. We're asking for drivers to take me to Chapel Hill and back on treatment days, meals, and help getting the girls to gymnastics. Fortunately, our church has been helpful as have many of our friends who continue to amaze me with the help they are willing to provide. Our youngest daughter started competitive team gymnastics recently so her schedule is even busier. But, with God's help and that of many other people too, we'll get through this tough time.
Happy New Year to all and God bless!
Sofie
Friday, December 3, 2010
Progression of mets
Our [Geoff and my] visit to my oncologist in Chapel Hill did not go so well. We did not do any scans but sat with Dr. Muss and explained that my quality of life has disappeared and I want it fixed. Dr. Muss has always said that, with bone metastases, the only way to gauge progression is to see how I feel. There are no tumors that can be measured when the cancer is in the bone. And I feel lousy. Every day. I'm taking a lot of pain medicine that helps but does not help enough. And there's no explanation for that. So, after 2 short months on Faslodex, we're moving on.
Last night, I had to dig out my new old friend "the wig." I don't know where all my sleep caps ended up so I had to order new ones. Yes, folks, I'm going back on the fun, hard core, lose your hair chemo. Starting December 29. It's not like I was planning a big New Years party anyway.
The plan is to start weekly Taxol and Avastin treatments on 12/29. I assume I'll receive about 12 treatments, if I can tolerate it. Taxol is notorious for causing bad peripheral neuropathy [numbness in the fingers]. Since I already have that, I may be retiring my typing job of writing appellate briefs for good. [I'm already on disability but working a little bit still]. You may have heard about Avastin recently because the FDA tried to ban its use in metastatic breast cancer patients. That's because although it helped slow progress of the disease, it did not extend their life. So, who cares that it helped people double their "progression free survival." It's all about survival in this game. To hell with how we feel during that survival period.
I'm thrilled to be bringing out the big guns, and ok with the hair loss too. See, I have very little quality of life. We went to Amelia Island, Florida for Thanksgiving. We ate very nice meals. Tried to drink a little wine here and there. On the 2 occasions I tried to overeat and have more than 2 glasses of wine, I had to retreat to our hotel room, lie face down on the bed, and try and keep the vomit down. So, two of my favorite activities, eating and drinking, are seriously limited right now. I have a great appetite, mind you, and have still managed to gain a few pounds. But if I overeat at all I get sick. So, not too fun.
If you live near us, and are able to help, please do so. Our office manager, Gladys, will be taking names and phone numbers again at 251-8333. In January, we'll need help with meals and with driving the girls to and from gymnastics. I'm going to plan on being in bed for 3 months. Hopefully I'll be more functional than that but considering how little I do now before chemo, it's not looking too good.
Happy holidays everyone! I hope you enjoy this time of year and all of its blessings.
Love,
Sofie
Last night, I had to dig out my new old friend "the wig." I don't know where all my sleep caps ended up so I had to order new ones. Yes, folks, I'm going back on the fun, hard core, lose your hair chemo. Starting December 29. It's not like I was planning a big New Years party anyway.
The plan is to start weekly Taxol and Avastin treatments on 12/29. I assume I'll receive about 12 treatments, if I can tolerate it. Taxol is notorious for causing bad peripheral neuropathy [numbness in the fingers]. Since I already have that, I may be retiring my typing job of writing appellate briefs for good. [I'm already on disability but working a little bit still]. You may have heard about Avastin recently because the FDA tried to ban its use in metastatic breast cancer patients. That's because although it helped slow progress of the disease, it did not extend their life. So, who cares that it helped people double their "progression free survival." It's all about survival in this game. To hell with how we feel during that survival period.
I'm thrilled to be bringing out the big guns, and ok with the hair loss too. See, I have very little quality of life. We went to Amelia Island, Florida for Thanksgiving. We ate very nice meals. Tried to drink a little wine here and there. On the 2 occasions I tried to overeat and have more than 2 glasses of wine, I had to retreat to our hotel room, lie face down on the bed, and try and keep the vomit down. So, two of my favorite activities, eating and drinking, are seriously limited right now. I have a great appetite, mind you, and have still managed to gain a few pounds. But if I overeat at all I get sick. So, not too fun.
If you live near us, and are able to help, please do so. Our office manager, Gladys, will be taking names and phone numbers again at 251-8333. In January, we'll need help with meals and with driving the girls to and from gymnastics. I'm going to plan on being in bed for 3 months. Hopefully I'll be more functional than that but considering how little I do now before chemo, it's not looking too good.
Happy holidays everyone! I hope you enjoy this time of year and all of its blessings.
Love,
Sofie
Monday, November 8, 2010
Dad's memorial
Well, some daughter I am. I forgot to mention that dad's memorial went very well! I had no idea how to have a memorial service and really didn't plan too much. So I just stood up and told his life story. It felt good to share his interesting life with everyone -- most folks there did not know him all that well or had not known him all of his life. So, even though I wasn't really excited about having the memorial in the beginning, it was nice to provide some punctuation at the end of his life. It was a warm and fuzzy Kodak kind of day.
For those of you that came, thank you so much! It meant a lot to have you there. I understand that due to travel constraints most relatives and family could not come. Knowing my father, he would have been just fine with that too!
I've got his ashes in the house now. We were going to sprinkle him in the ocean out here but I'm a bit undecided about that now. He was not a big beach guy here in North Carolina. I've got to think about where he'd like to rest for eternity. In the meantime, he's a great houseguest. Having him in the living room is kind of nice! I can talk to him and he has to listen! No matter what football game is on t.v., etc. :)
Hugs and kisses...
For those of you that came, thank you so much! It meant a lot to have you there. I understand that due to travel constraints most relatives and family could not come. Knowing my father, he would have been just fine with that too!
I've got his ashes in the house now. We were going to sprinkle him in the ocean out here but I'm a bit undecided about that now. He was not a big beach guy here in North Carolina. I've got to think about where he'd like to rest for eternity. In the meantime, he's a great houseguest. Having him in the living room is kind of nice! I can talk to him and he has to listen! No matter what football game is on t.v., etc. :)
Hugs and kisses...
Sorry no write...
I hope everyone had a great Halloween. I know we did! I even managed to cook a few things which my family will tell you is very rare these days.
I've been bad about updating on here. I had about a week of feeling pretty darn good -- I saw the oncologist in Chapel Hill and he put me on Faslodex (2 shots in the rear end, not so good) and back on the Zometa bone strengthening regimen. So, cocky me, I decided I no longer needed pain meds and contacted my pain management PA about curtailing all the meds. All he## broke loose even though I did so gradually. Now, even though I'm basically back on the meds I was on before, I still feel like I'm trying to catch up with the pain. Anyone who has had chronic pain can understand the worst part is trying to catch up when the pain gets ahead of you. It just doesn't work. Anyhoo, that's why I've been AWOL. When the pain saturates your life it just stinks because NOTHING goes well. I'm going to work on getting it straightened out and then leave it alone for goodness sake!
The family is doing well and gearing up for our trip to Florida for Thanksgiving. I've never been to Amelia Island so I'm excited.... probably more excited than the kids are to see Santa too!
I promise to write more soon when I've got a fresher mind. Right now, it's dinnertime and I'm hungry and ready for bed.
Nighty night everyone!
I've been bad about updating on here. I had about a week of feeling pretty darn good -- I saw the oncologist in Chapel Hill and he put me on Faslodex (2 shots in the rear end, not so good) and back on the Zometa bone strengthening regimen. So, cocky me, I decided I no longer needed pain meds and contacted my pain management PA about curtailing all the meds. All he## broke loose even though I did so gradually. Now, even though I'm basically back on the meds I was on before, I still feel like I'm trying to catch up with the pain. Anyone who has had chronic pain can understand the worst part is trying to catch up when the pain gets ahead of you. It just doesn't work. Anyhoo, that's why I've been AWOL. When the pain saturates your life it just stinks because NOTHING goes well. I'm going to work on getting it straightened out and then leave it alone for goodness sake!
The family is doing well and gearing up for our trip to Florida for Thanksgiving. I've never been to Amelia Island so I'm excited.... probably more excited than the kids are to see Santa too!
I promise to write more soon when I've got a fresher mind. Right now, it's dinnertime and I'm hungry and ready for bed.
Nighty night everyone!
Tuesday, October 12, 2010
Moving on....
I've not posted lately, I know. I can't say I've been in the total doldrums because of the loss of my dad, although it obviously saddens me. I think I'm just trying to get on with my life but still trying to bury my head in the sand about the big "C" which is trying to rear its ugly head again. If I don't blog, I can sometimes forget, at least for a while.
Yes, the back pain has been ratcheting up again, despite loads of pain meds. Off for another MRI in Chapel Hill next week which will probably not show anything new to explain the pain increase because it usually doesn't (do I sound cynical or what?). I'm just anxious to find something new to help decrease the pain, something other than an opiate or traditional radiation (been there, done that).
Halloween is big in our house, so we're getting the house all decorated and ready. Our annual trick or treat event is on, so if you want to trick or treat with the kids, come on over! The only condition is that the adults also have to dress up :) It only comes once a year after all!
I hope that everyone is doing well and getting ready for the holiday season, which is just around the corner. (eeeekkkk) As for me, I'm just going to try and get some early shopping done and wait for our holiday travels to Amelia Island, Florida for Thanksgiving (lots of Santa events!) and to the Grove Park Inn in Asheville for Christmas. I could travel year round....
Lots of love to everyone,
Sofie
Yes, the back pain has been ratcheting up again, despite loads of pain meds. Off for another MRI in Chapel Hill next week which will probably not show anything new to explain the pain increase because it usually doesn't (do I sound cynical or what?). I'm just anxious to find something new to help decrease the pain, something other than an opiate or traditional radiation (been there, done that).
Halloween is big in our house, so we're getting the house all decorated and ready. Our annual trick or treat event is on, so if you want to trick or treat with the kids, come on over! The only condition is that the adults also have to dress up :) It only comes once a year after all!
I hope that everyone is doing well and getting ready for the holiday season, which is just around the corner. (eeeekkkk) As for me, I'm just going to try and get some early shopping done and wait for our holiday travels to Amelia Island, Florida for Thanksgiving (lots of Santa events!) and to the Grove Park Inn in Asheville for Christmas. I could travel year round....
Lots of love to everyone,
Sofie
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