Although my biopsy isn't until next Monday (6/2), they did some extra testing on my blood that is showing blasts. They told us in clinic on Tuesday (5/27) that it looks like my leukemia is back. They don't want to wait for the biopsy results and feel I should start talking to Duke or Hopkins to see what they can offer me. We have an appointment next week at Duke to see if I am eligible for a clinical trial there. We haven't heard much from Hopkins yet.
Since Tuesday I have just been getting platelets every other day and resting at home. I have aches and fevers in the morning and evening but Tylenol helps, but my energy is still pretty good. On Monday, I hope there will be time to talk with the VCU doctors about all of the options out there. Please pray that we will be led to the treatment that is best for us. It is a very hard time right now as it feels like there are fewer and fewer options available.
We told the kids on Thursday and they are really sad but holding up ok. We really don't know what the next few weeks will hold, but we will take it one day at a time. We will just lay it at the feet of the Lord as Brant says and continue to pray for miracles.
Friday, May 30, 2014
Monday, May 26, 2014
Memorial Day
I hope everyone had a chance to remember our fallen heroes today and the holiday was not just lost in burgers and family cookouts - although those are great, too! We were in Richmond for the last day of Chris' volleyball tournament and I saw some of the coverage of the ceremonies at the War Memorial on TV. Actually I was in clinic while Brant and Katie were down the street at the Convention Center with Chris. We had a really nice 3-day weekend in Richmond with the other volleyball families, and it made my commute to clinic on Sat and Mon very quick!!
I know I haven't posted in a while. It has been an up and down time for me. We have been in Richmond WAY too much over the last two weeks and the kids have had very busy schedules, too. I am behind on my own personal journal, which I really like as a daily reference as to how I was feeling, what the docs changed, what the family did, etc. As many of you saw on FB, we lost a good friend in the transplant program last week, and then later in the week I found out another has been placed in Hospice with not much time left. It just really takes the wind out of your sails as you try to get up each day and fight to be positive. Especially when you are having issues of your own.
My blood counts are not as high as they were last month and my platelets have really fallen. I am back to getting platelet transfusions every day or every other day. I was able to do my two days of photopheresis last week on Wed/Thurs. My WBC count hung in there at 2.0 on Day 1 and 1.8 on day 2. It wasn't too bad. Just lots of sitting. After photopheresis on Thursday, one of the Dr's told me they have seen some blasts circulating in my blood for the last three samples - could be leukemia....could be something else...... They sent off for more special tests but due to the holiday weekend I have no results. They are trying to move up my biopsy to this coming week. The medical team has pretty much said they can't tell me what is going on until we have good biopsy results. So we will try to give all those worries to God until that point at which we have information to know what is happening. "Can anyone of you by worrying add a single hour to your life?" Matthew 6:27. And until that point, back to our motto - we need to try to enjoy each day as it comes.
I am down to 30 mg of prednisone now and should be completely done in 2-1/2 more weeks. Donuts and Oreos are much safer. They are tapering me down quickly in case it is suppressing the bone marrow and/or the immune response of my donor cells to kill leukemia. I have felt so tired and achy - especially after photopherersis - and have used a lot of Tylenol and had low grade fevers. The nurses told me that it is not easy coming off of prednisone as you own body has to ramp back up making cortisol. So it was good to hear a possible explanation other than leukemia which is always where my mind always tends to wander......
I went to clinic to get repletions today and needed blood and platelets. I spiked a temperature of 102.6 in clinic but it came down with Tylenol. That earned me two bags of IV antibiotics and a return trip to clinic tomorrow. Door #2 was getting admintted...... We went with Door #1. By the afternoon I felt much better and have had no fevers or aches to speak of. I enjoyed sitting outside for a bit today in the evening shade and looking at our plants. It really was a gorgeous weekend.
We ask for prayers of peace as we wait out a few more weeks of uncertainty. And we are always trusting that God is bigger than this and will see us through.
I know I haven't posted in a while. It has been an up and down time for me. We have been in Richmond WAY too much over the last two weeks and the kids have had very busy schedules, too. I am behind on my own personal journal, which I really like as a daily reference as to how I was feeling, what the docs changed, what the family did, etc. As many of you saw on FB, we lost a good friend in the transplant program last week, and then later in the week I found out another has been placed in Hospice with not much time left. It just really takes the wind out of your sails as you try to get up each day and fight to be positive. Especially when you are having issues of your own.
My blood counts are not as high as they were last month and my platelets have really fallen. I am back to getting platelet transfusions every day or every other day. I was able to do my two days of photopheresis last week on Wed/Thurs. My WBC count hung in there at 2.0 on Day 1 and 1.8 on day 2. It wasn't too bad. Just lots of sitting. After photopheresis on Thursday, one of the Dr's told me they have seen some blasts circulating in my blood for the last three samples - could be leukemia....could be something else...... They sent off for more special tests but due to the holiday weekend I have no results. They are trying to move up my biopsy to this coming week. The medical team has pretty much said they can't tell me what is going on until we have good biopsy results. So we will try to give all those worries to God until that point at which we have information to know what is happening. "Can anyone of you by worrying add a single hour to your life?" Matthew 6:27. And until that point, back to our motto - we need to try to enjoy each day as it comes.
I am down to 30 mg of prednisone now and should be completely done in 2-1/2 more weeks. Donuts and Oreos are much safer. They are tapering me down quickly in case it is suppressing the bone marrow and/or the immune response of my donor cells to kill leukemia. I have felt so tired and achy - especially after photopherersis - and have used a lot of Tylenol and had low grade fevers. The nurses told me that it is not easy coming off of prednisone as you own body has to ramp back up making cortisol. So it was good to hear a possible explanation other than leukemia which is always where my mind always tends to wander......
I went to clinic to get repletions today and needed blood and platelets. I spiked a temperature of 102.6 in clinic but it came down with Tylenol. That earned me two bags of IV antibiotics and a return trip to clinic tomorrow. Door #2 was getting admintted...... We went with Door #1. By the afternoon I felt much better and have had no fevers or aches to speak of. I enjoyed sitting outside for a bit today in the evening shade and looking at our plants. It really was a gorgeous weekend.
We ask for prayers of peace as we wait out a few more weeks of uncertainty. And we are always trusting that God is bigger than this and will see us through.
Wednesday, May 14, 2014
Vidaza Days in Richmond
My WBC count has been rising and today I was up to 2.2. My platelets have been a little more sluggish and only got up to 68. They were down to 56 today. I would like to see them up above 100 again - that was nice. My HgB (the red blood cells) have been 8.0 every day here in clinic. That is what they transfuse me at, but I have pushed it off each day waiting for them to drop below 8.0. It was really cool to see my blood type as B Pos on the lab sheet for my type and cross. I guess I didn't fully believe I had switched to George, but looks like it has stuck.
I saw the Dr. today and discussed my biopsy results, which of course wasn't much. The pathology summary statement was something like: the lack of bone marrow aspirate for.....special studies precludes additional evaluation, and it cannot be determined if the immature focus (cells I think) represent delayed bone marrow regeneration or residual acute leukemia. There were a lot more words than that, but I didn't understand them...lol. So I have to take away the good things from the report: they didn't find any obvious signs of leukemia and my chimerisms (% me vs % donor) are all 100% donor for what they could test.
They are going to probably do my next biopsy with Interventional Radiology. The doctor feels very confident I have aspirate somewhere....I couldn't be producing the blood counts that I have and I couldn't have switched to George's blood type if I didn't have it. He just thinks either my bone structure, or too much chemo and too many biopsies have "relocated" it. So they will use a Cat Scan ( I think ) while they do the next biopsy to look for the aspirate and guide the needle. I really don't care if they just put me out and find the stuff. He didn't seem in too much of a rush to do one. Great..... more waiting for info. But the medical team seems happy with where I am at right now and they want to focus on getting my counts up and looking out for GVH.....not poking me for bone marrow. The photopheresis is also on hold for now. We will see where my counts are at the end of the week and I may come back next week or they may hold until my next cycle of Vidaza.
My prednisone was reduced last week to 40mg per day and I have definitely started to feel it. I am more like Supergirl now than Superwoman. I have more days with less energy - especially after days when I have done more activity. Yesterday was a high energy day and I used the elliptical for 10 mins here at the Hospitality House. That was a new set of muscles since I have been doing the recumbant bike when I exercise at home. I woke up today very tired and sore, then realized I was fever-achy. I spiked up to 100.4 before taking Tylenol. They did cultures and viral testing in clinic today, so I will know tomorrow or Friday if I have caught a bug. But I really don't feel like it. I was just tired today. My fever never came back up and I hope it doesn't reappear tomorrow morning. It seems like whenever I overexert myself and get sore, I get a temperature and achiness. Not sure if that is what is going on.
I gotta mention what an awesome Mother's Day I had. It was such a blessing that they pushed off my Vidaza a few days so I was at home instead of in Richmond. The kids got up early and made me muffins...without any assistance or fires. They brought me breakfast in bed. You know you have "cancer kids" when they bring you your morning meds with breaksfast so you don't have to get up. We went to the early service of church which wasn't too crowded and then Brant and the kids planted my summer flowers since I'm not supposed to dig in the dirt. I also got some new clothes in my "smaller" size for the summer. There were a few quiet hours at home alone in the evening to round out a perfect day. Thanks so much Brant and kids!
Well, I better get ready for bed. Only two more sleeps as they would say in Australia and then I can go home!
Friday, May 9, 2014
Photopheresis Fun
I had another nice week at home after returning last Wednesday from my biopsy. They gave me the whole week off but I did go to the local oncologist on Monday to get my labs checked. My white count creeped up from 0.6 to 0.8 and my platelets were rising from 32 up to 46. Not very big increases, but at least we are headed in the right direction.
Mom and I headed out Wednesday morning - again early for an 8:30 appt and again with me feeling tired and not so energetic. I think the prednisone gives me a false sense of energy and every few days my body says - "whoa! time to take it a little easy and rest." It was Nurse Appreciation Week so we stopped at O'Doodle Doos to get two dozen (plus 1) donuts for the nurses. I did not touch their stash for the 1-1/2 hour ride up. Very impressive.
I headed over to the Apheresis clinic and got the same nurse that George had on his last day here in February. I had to be consented by the Resident before beginning the procedure. He explained the process a little bit more - take out a portion your blood, put it in a spinning machine to separate out the white cells, add some medicine that makes the blood sensitive to light, shine UV lasers thru the white cells, return blood to your system. Repeat for 3-4 hours. I knew my white count was low, so I asked him how much this dropped your white count. He wasn't sure...
So I got my labs drawn and they started me on the machine. Fortunately the port I have installed on my left shoulder will work so no needle sticks in the arm. The needle they use is VERY large and even with the port it was somewhat uncomfortable. I felt very badly for George having TWO of these in his arms for two days. I fell asleep pretty quickly only to be woke up in a hour when the nurse got my labs back and my white cell count was only 0.9. Well, yeah, I could have told you it would be low. (My platelets were up again to 57 and my HgB was holding). Apparently you are supposed to have a white count of 2.0 or higher (preferred) or at least around 1.5. This is both for safety and effectiveness. Since they are treating the white cells, if there are none there, the treatment isn't really doing much.
So there was a flurry of activity and they paged one of the bone marrow doctors. They went ahead and did the light treatment on what was in the chamber - it only took 10 minutes since there were so few cells. Then they took me off the machine and cancelled me for Thursday. Mom was highly annoyed since the whole mishap could have been avoided by several different people in the chain starting with my doctor last week and ending with my nurse that morning. But it is not a perfect process for sure.
I headed over to the bone marrow clinic and had a quick visit with the doctor. They will do the photopheresis when my counts come back up. They seem to be a little sluggish this month and so the doctor took me off of the immunosuppressive drug and reduced my prednisone from 50mg to 40mg/day. My liver numbers are all back in normal range, so hopefully they will stay there as the meds come down. I am still scheduled to come back on Monday to start my lower dose of Vidaza chemo. Oddly enough, my counts tend to be the highest the week of and one week after chemo, then they fall for 1-1/2 weeks before starting to climb back up. They should get high enough to do photopheresis later in the month.
So we gathered our things from the Hospitality House (mom had already unloaded for our overnight) and headed back home. I have been a little less energectic and had a lot of muscle and bone pain Wednesday night. I have been exercising both doing the recumbent bike and some light strength training (at home since my counts are still low). So I don't know if it is soreness from that, or maybe my bone marrow getting busy making cells because that tends to cause aches, too. They will check me on Monday for graft vs host of the muscles which can happen as well. It has been a little better and Tylenol works well to keep the discomfort down.
I am looking forward to the weekend even though it will be HOT. I like heat and am so tired of being cold. Happy early Mother's Day to all of you moms out there. I hope you get spoiled rotten!! I so remember last Mother's Day of being in the hospital. My doctor came in for rounds and casually mentioned that my biopsy showed empty bone marrow with no leukemia present. It was such an exciting day and my first good results in this whole process. But I will enjoy even more this year of being at home with my kids where a mom is supposed to be!
Mom and I headed out Wednesday morning - again early for an 8:30 appt and again with me feeling tired and not so energetic. I think the prednisone gives me a false sense of energy and every few days my body says - "whoa! time to take it a little easy and rest." It was Nurse Appreciation Week so we stopped at O'Doodle Doos to get two dozen (plus 1) donuts for the nurses. I did not touch their stash for the 1-1/2 hour ride up. Very impressive.
I headed over to the Apheresis clinic and got the same nurse that George had on his last day here in February. I had to be consented by the Resident before beginning the procedure. He explained the process a little bit more - take out a portion your blood, put it in a spinning machine to separate out the white cells, add some medicine that makes the blood sensitive to light, shine UV lasers thru the white cells, return blood to your system. Repeat for 3-4 hours. I knew my white count was low, so I asked him how much this dropped your white count. He wasn't sure...
So I got my labs drawn and they started me on the machine. Fortunately the port I have installed on my left shoulder will work so no needle sticks in the arm. The needle they use is VERY large and even with the port it was somewhat uncomfortable. I felt very badly for George having TWO of these in his arms for two days. I fell asleep pretty quickly only to be woke up in a hour when the nurse got my labs back and my white cell count was only 0.9. Well, yeah, I could have told you it would be low. (My platelets were up again to 57 and my HgB was holding). Apparently you are supposed to have a white count of 2.0 or higher (preferred) or at least around 1.5. This is both for safety and effectiveness. Since they are treating the white cells, if there are none there, the treatment isn't really doing much.
So there was a flurry of activity and they paged one of the bone marrow doctors. They went ahead and did the light treatment on what was in the chamber - it only took 10 minutes since there were so few cells. Then they took me off the machine and cancelled me for Thursday. Mom was highly annoyed since the whole mishap could have been avoided by several different people in the chain starting with my doctor last week and ending with my nurse that morning. But it is not a perfect process for sure.
I headed over to the bone marrow clinic and had a quick visit with the doctor. They will do the photopheresis when my counts come back up. They seem to be a little sluggish this month and so the doctor took me off of the immunosuppressive drug and reduced my prednisone from 50mg to 40mg/day. My liver numbers are all back in normal range, so hopefully they will stay there as the meds come down. I am still scheduled to come back on Monday to start my lower dose of Vidaza chemo. Oddly enough, my counts tend to be the highest the week of and one week after chemo, then they fall for 1-1/2 weeks before starting to climb back up. They should get high enough to do photopheresis later in the month.
So we gathered our things from the Hospitality House (mom had already unloaded for our overnight) and headed back home. I have been a little less energectic and had a lot of muscle and bone pain Wednesday night. I have been exercising both doing the recumbent bike and some light strength training (at home since my counts are still low). So I don't know if it is soreness from that, or maybe my bone marrow getting busy making cells because that tends to cause aches, too. They will check me on Monday for graft vs host of the muscles which can happen as well. It has been a little better and Tylenol works well to keep the discomfort down.
I am looking forward to the weekend even though it will be HOT. I like heat and am so tired of being cold. Happy early Mother's Day to all of you moms out there. I hope you get spoiled rotten!! I so remember last Mother's Day of being in the hospital. My doctor came in for rounds and casually mentioned that my biopsy showed empty bone marrow with no leukemia present. It was such an exciting day and my first good results in this whole process. But I will enjoy even more this year of being at home with my kids where a mom is supposed to be!
Saturday, May 3, 2014
Disappointing Biopsy
After several days of feeling great and having lots of energy (prednisone) I was nervous about my biopsy appointment on Wednesday. I woke up feeling not so good. We had to leave earlier than usual for an 8:30 appointment. I did manage to get in a donut on the way which made me feel a little better. At clinic I had a low temperature of 99.7 which is probably why I felt kinda bad. Amazingly my weight was about the same despite my new appetite. They had to wait for my lab results before I could do my biopsy. My platelets came up slightly from 22 to 31 which was good. My WBCs fell a lot though, down from being over 2.0 to 0.6. I have been tracking my counts and I had this kind of drop last month after Vidaza chemo, but still it was disappointing. I had hoped maybe my bone marrow would be stronger and get thru things this month.
So the biopsy didn't go well. Even though they have the best guy who does the procedures, he couldn't find any aspirate. That is the liquid material in the spongy part of the bone. He tried 5 spots...after giving me 50 mg of extra phentonol...so the pain wasn't too bad, but I was in tears from disappointment. I knew that it meant I won't get any results about blasts or whether they see leukemia.....so more weeks of unknown. It also means my bone marrow is very empty again.
The doctor came to see me and was very sympathetic. They have so much to try to balance - fighting leukemia with chemo, backing down the graft vs host with prednisone, and trying to build up my bone marrow. Of course, treatments for one of these usually means making the other two worse. They have decided to focus on building up my bone marrow for now. So I will start photo-pheresis next week to control the graft vs host. This will allow them to take me off the prednisone and immunosuppressant drugs which are suppressing my bone marrow and limiting the ability of my new immune system to attack leukemia. They are also switching me to a maintenance level of chemo (still Vidaza). It will only be half the intensity and for 5 days instead of 7. It will be less effective at killing leukemia, but it will not hit my marrow so hard. They are delaying my next treatment a week to give my marrow some extra time to build back up. They would like to give me more of George's cells, but because of the liver response last time, they are going to wait and see how the other things work. I don't know too much about photo-pheresis yet. It is for two days a month for a year. I sit in a chair for about 4-5 hours each day while they pull my blood out of the port, run it through a special light that kills specific t-cells that cause GVH, and then put it back into the port. It will be in the same place where George did his stem cell collection. I go next Wednesday and Thursday for my first treatment. It is a fairly new treatment method and I think I will actually be part of a clinical trial.
So it was a very long and emotional day. I also needed a blood transfusion and I just had one 9 days earlier. But on the way home we hit Steak and Shake, and a good milkshake seemed to make things a little better. Plus mom, who was upset herself, is always such a good encourager. I think I am pretty well over the disappointment now. My energy was right back on Thursday and I have been insanely busy again for the last several days. There has been much work done around the house. I enjoyed a night with some girlfriends at home on Friday. We went down to the beach today and walked on the boardwalk. It was chilly but a beautiful day and way to get my walking done!
My family got me a new exercise bike/elliptical as a one year gift so I can do my cardio at home. No one seems too excited about me going to the gym, especially with my counts low again. Brant and I talked today and he encouraged me to back it down a few notches. The prednisone has me feeling like I am normal (or a little super human) and I am doing and eating normal things, but I really shouldn't be pushing the limits so much. So I am going to try to get back into a more cautious mode again even though I want to do like 10,000 different projects. It is exhausting for him to just listen to me.....ha! I wonder what my energy will be like when I come back off the prednisone....?
It is late and I should get off to bed. Thanks for keeping me in your thoughts and prayers.
So the biopsy didn't go well. Even though they have the best guy who does the procedures, he couldn't find any aspirate. That is the liquid material in the spongy part of the bone. He tried 5 spots...after giving me 50 mg of extra phentonol...so the pain wasn't too bad, but I was in tears from disappointment. I knew that it meant I won't get any results about blasts or whether they see leukemia.....so more weeks of unknown. It also means my bone marrow is very empty again.
The doctor came to see me and was very sympathetic. They have so much to try to balance - fighting leukemia with chemo, backing down the graft vs host with prednisone, and trying to build up my bone marrow. Of course, treatments for one of these usually means making the other two worse. They have decided to focus on building up my bone marrow for now. So I will start photo-pheresis next week to control the graft vs host. This will allow them to take me off the prednisone and immunosuppressant drugs which are suppressing my bone marrow and limiting the ability of my new immune system to attack leukemia. They are also switching me to a maintenance level of chemo (still Vidaza). It will only be half the intensity and for 5 days instead of 7. It will be less effective at killing leukemia, but it will not hit my marrow so hard. They are delaying my next treatment a week to give my marrow some extra time to build back up. They would like to give me more of George's cells, but because of the liver response last time, they are going to wait and see how the other things work. I don't know too much about photo-pheresis yet. It is for two days a month for a year. I sit in a chair for about 4-5 hours each day while they pull my blood out of the port, run it through a special light that kills specific t-cells that cause GVH, and then put it back into the port. It will be in the same place where George did his stem cell collection. I go next Wednesday and Thursday for my first treatment. It is a fairly new treatment method and I think I will actually be part of a clinical trial.
So it was a very long and emotional day. I also needed a blood transfusion and I just had one 9 days earlier. But on the way home we hit Steak and Shake, and a good milkshake seemed to make things a little better. Plus mom, who was upset herself, is always such a good encourager. I think I am pretty well over the disappointment now. My energy was right back on Thursday and I have been insanely busy again for the last several days. There has been much work done around the house. I enjoyed a night with some girlfriends at home on Friday. We went down to the beach today and walked on the boardwalk. It was chilly but a beautiful day and way to get my walking done!
My family got me a new exercise bike/elliptical as a one year gift so I can do my cardio at home. No one seems too excited about me going to the gym, especially with my counts low again. Brant and I talked today and he encouraged me to back it down a few notches. The prednisone has me feeling like I am normal (or a little super human) and I am doing and eating normal things, but I really shouldn't be pushing the limits so much. So I am going to try to get back into a more cautious mode again even though I want to do like 10,000 different projects. It is exhausting for him to just listen to me.....ha! I wonder what my energy will be like when I come back off the prednisone....?
It is late and I should get off to bed. Thanks for keeping me in your thoughts and prayers.
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