It is hard to believe that one year ago we walked thru the doors of the Massey Cancer Center Bone Marrow Transplant clinic and were in a hospital room that night. What a blur it all was - less than two weeks between when I first felt sick (weak) and having to choose where to receive treatment for a disease I didn't really even understand. We were so scared, confused, anxious....you name it. Yet now we have gone thru an entire calendar year of holidays and milestones, of tears and of celebrations. Although I am not free of this disease as I had hoped, I am so thankful to be sitting here at home typing this in relatively good health. If you look at the statistics for secondary AML (which I do not recommend), I am a major success at being a 1 year OS (overall survival) data point. Next goal: 2 year DF (disease free) data point.
I am so glad we chose VCU. It was tough to know what to do. People said Duke or Hopkins, we also considered going back to Sloan Kettering in NYC where I was treated in 2007. But Richmond seemed to fit. The team of four doctors has been wonderful and I feel like my case is handled with more individuality than at a larger center. The nurses are like our extended family, and the other patients really form friendships with you as we keep up with each other's progress. Virginia is fortunate to have such a good cancer center available to us - I just wish it could be in Hampton Roads!! We do know I-64 very well by now!
I am still having a good week. The prednisone is causing me lots of water gain so I feel like I have elephant legs and feet. They called yesterday and reduced my dose some, hopefully at clinic tomorrow I will be reduced even more. I can't sleep very well and you probably don't want to get in a conversation with me right now as I am totally wired. Another exciting tidbit is that my blood type has officially switched over - I am now a male B+ blood type thanks to George's cells taking over completely. It took a while, but we are getting there.
Why is it so hard to believe in miracles?? As we approach next week's biopsy I am so hopeful that it will show good strong marrow and no signs of leukemia. We pray for this daily. We tell God that we know and trust he can do anything - beat the odds, make it happen when science says it can't. I have been feeling so good and all of the signs are pointing that way. Yet I find myself still full of fear and scared to let myself believe it could actually happen. It's like it is easier to trust when things are looking bad than to believe when things are looking good. I have images of God being a tad bit exasperated with me...."You've been asking.....did you think I wasn't listening?". Anyway, I will quit rambling, I just find it odd that sometimes I am most scared when things are going most well.
Here's to the start of another year!
Thursday, April 24, 2014
Monday, April 21, 2014
An Awesome Easter Weekend
After getting back from Richmond on Tuesday I was pretty wiped out. The couch and my electric blanket with Max the Cat at my feet was most of my day on both Wed and Thurs. The kids were on Spring Break so there was still a fair bit of running around and fixing food and cleaning up, but it was a struggle. I had some tears just being so tired of the whole unending process.
Then Friday I woke up with energy - I think the steroids have kicked in - who knows. Chris had a volleyball tournament in Richmond on Saturday so we went up to VCU clinic Friday afternoon and spent the night in Richmond. My counts were still good and I didn't need anything at clinic. We had a nice time going out to dinner - food is definitely my new hobby. On Saturday we were at the gym most of the day - the boys did great and I had a nice time talking with the parents and watching them play. We made it home late Saturday evening after a fun dinner with our friends in Richmond. Poor Brant had to drive us home while we all relaxed in the car.
Sunday we were able to go to church. I am still a little apprehensive around crowds and Easter is definitely not a slow day at church! But it is one of my favorite holidays with so much hope and promise for the start of a new year (winter is part of last year in my opinion!!) and of course celebrating the Greatest gift the world has received. So we threw the gang together Sunday morning and our friends held us some nice seats together in the back. The music was wonderful and one song "I'm Free" just really resonated with me. I have felt so trapped by this disease lately, especially when my energy is low I get depressed and just want to be DONE WITH IT!! But on Sunday as we sang that song, I truly felt free of it - whether it was there or not. I could enjoy right now, being together, worshipping with our church, feeling strong enough to stand up the entire music time (which is no small feat!!). Anyway, it was just wonderful and I was very happy. Here is our impromptu Easter family pic.
Later we had a nice meal and visited at my parents with Ruth and then for dinner had an awesome time at Brant's cousin's house with his family. We didn't get home until almost 9pm but I wasn't exhausted. My belly was full (did I mention I like food these days??) and I was ready for a good night's sleep. So I had a great weekend.
Today my energy level has continued to be high. I definitely think it is the prednisone steroids. My lips are slowly disappearing into my fattening cheeks (steroid face). Mom thinks it is nice, I hate it. We went up to clinic together today and it was a LONG day. They were very backed up and I needed a blood transfusion. It has been three weeks since my last one so that is really good. Mom and I didn't make it home until almost 6pm but at least the sun decided to come out and the drive wasn't too bad. I will go back on Friday and see the Doctor. My goal is to get off prednisone, although I am sure the best I will get is to have it lowered some. My liver is almost back to normal, but they will most likely taper me to prevent a flare-up.
Next Wednesday is biopsy and seeing the cardiologist. Again, I hope to talk them out of some drugs. But it just seems like when they put me on something and it works, they are SLOW to take it back away. We are eager to hear biopsy results. My wish is that they become more definitive and show that the leukemia is not around. But you just never know what they are going to see.
Well, I better go find something to do with all of this energy. Eating donuts is on the top of my list, but I am trying to be good. My tastebuds have lost the salty/savory sensation and apparently tripled in the sugar area. Bummer. I have put back on about 5 lbs which is good. I think I will start trying to go to the gym and work on building those muscles up. The doctor said I could go if it was the middle of the day and if I cleaned off the equipment really well.
That's the update from here. Hope everyone has a good week.
Then Friday I woke up with energy - I think the steroids have kicked in - who knows. Chris had a volleyball tournament in Richmond on Saturday so we went up to VCU clinic Friday afternoon and spent the night in Richmond. My counts were still good and I didn't need anything at clinic. We had a nice time going out to dinner - food is definitely my new hobby. On Saturday we were at the gym most of the day - the boys did great and I had a nice time talking with the parents and watching them play. We made it home late Saturday evening after a fun dinner with our friends in Richmond. Poor Brant had to drive us home while we all relaxed in the car.
Sunday we were able to go to church. I am still a little apprehensive around crowds and Easter is definitely not a slow day at church! But it is one of my favorite holidays with so much hope and promise for the start of a new year (winter is part of last year in my opinion!!) and of course celebrating the Greatest gift the world has received. So we threw the gang together Sunday morning and our friends held us some nice seats together in the back. The music was wonderful and one song "I'm Free" just really resonated with me. I have felt so trapped by this disease lately, especially when my energy is low I get depressed and just want to be DONE WITH IT!! But on Sunday as we sang that song, I truly felt free of it - whether it was there or not. I could enjoy right now, being together, worshipping with our church, feeling strong enough to stand up the entire music time (which is no small feat!!). Anyway, it was just wonderful and I was very happy. Here is our impromptu Easter family pic.
Later we had a nice meal and visited at my parents with Ruth and then for dinner had an awesome time at Brant's cousin's house with his family. We didn't get home until almost 9pm but I wasn't exhausted. My belly was full (did I mention I like food these days??) and I was ready for a good night's sleep. So I had a great weekend.
Today my energy level has continued to be high. I definitely think it is the prednisone steroids. My lips are slowly disappearing into my fattening cheeks (steroid face). Mom thinks it is nice, I hate it. We went up to clinic together today and it was a LONG day. They were very backed up and I needed a blood transfusion. It has been three weeks since my last one so that is really good. Mom and I didn't make it home until almost 6pm but at least the sun decided to come out and the drive wasn't too bad. I will go back on Friday and see the Doctor. My goal is to get off prednisone, although I am sure the best I will get is to have it lowered some. My liver is almost back to normal, but they will most likely taper me to prevent a flare-up.
Next Wednesday is biopsy and seeing the cardiologist. Again, I hope to talk them out of some drugs. But it just seems like when they put me on something and it works, they are SLOW to take it back away. We are eager to hear biopsy results. My wish is that they become more definitive and show that the leukemia is not around. But you just never know what they are going to see.
Well, I better go find something to do with all of this energy. Eating donuts is on the top of my list, but I am trying to be good. My tastebuds have lost the salty/savory sensation and apparently tripled in the sugar area. Bummer. I have put back on about 5 lbs which is good. I think I will start trying to go to the gym and work on building those muscles up. The doctor said I could go if it was the middle of the day and if I cleaned off the equipment really well.
That's the update from here. Hope everyone has a good week.
Monday, April 14, 2014
Finishing Up Round 7 of Chemo in Richmond
Tomorrow is my last day of Vidaza chemo for this month and hopefully I will be going home for my three weeks off (except for day trips for clinic checks). The week started with me being very weak and feeling bad. But the drugs they have put me on have really dropped my liver enzymes and I am almost back to normal levels. I will continue to stay on the drugs for a while to make sure this flare-up of Graft vs Host (GVH) does not come back. My heart rate has also dropped back to normal and I am hoping I can lose a cardio drug after seeing the cardiologist in a few weeks. I counted up my pills and I take about 32 a day - yuck. There are several of the same kind, but it is still a pain getting them all down!
I will not get a boost of donor cells this month as previously planned because they don't want to cause any more GVH right now. The cells I got from George back in February still seem to be working strong!
My blood counts have been really good lately so I am hopeful that the bone marrow is regenerating. I haven't had any transfusions in quite a while. Even my Hgb seems to be staying up on its own which has not happened since my transplant last year. I still expect my counts to drop a little here in a week or so from the effects of the Vidaza chemo, but hopefully they will bounce back before long.
I have a biopsy scheduled in about two more weeks. I am anxious to see if the blasts are still there. It is tough living from biopsy to biopsy....especially when the results aren't all that conclusive. But as mom says, I am here to enjoy another day and we just have to go with it.
The predinisone steroid they have put me on has really increased my appetite - especailly for SWEETS!! But I haven't really put on much weight because all of the new meds still seem to have my intestinal tract tore up. But in general, I am feeling better now than when I arrived here last Wednesday. When I lay down I feel like I could sleep all day, but if I get up (or am kicked out by mom) I find a little energy. We have taken a few outings to get out and stretch my legs. My muscles are really weak and I know I should be exercising more but my motivation is low. It would be nice to have a trainer or therapist come over and just tell me what to do, but that is one more thing to deal with and I really do know how to exercise - I just need to do it!
I am excited to get home tomorrow and see Brant and the kids. It will be nice to get back into the family things. It has seemed like a long week away from home. But we have had a nice stay and I am grateful for all that the nurses and doctors are doing to get me better.
I will not get a boost of donor cells this month as previously planned because they don't want to cause any more GVH right now. The cells I got from George back in February still seem to be working strong!
My blood counts have been really good lately so I am hopeful that the bone marrow is regenerating. I haven't had any transfusions in quite a while. Even my Hgb seems to be staying up on its own which has not happened since my transplant last year. I still expect my counts to drop a little here in a week or so from the effects of the Vidaza chemo, but hopefully they will bounce back before long.
I have a biopsy scheduled in about two more weeks. I am anxious to see if the blasts are still there. It is tough living from biopsy to biopsy....especially when the results aren't all that conclusive. But as mom says, I am here to enjoy another day and we just have to go with it.
The predinisone steroid they have put me on has really increased my appetite - especailly for SWEETS!! But I haven't really put on much weight because all of the new meds still seem to have my intestinal tract tore up. But in general, I am feeling better now than when I arrived here last Wednesday. When I lay down I feel like I could sleep all day, but if I get up (or am kicked out by mom) I find a little energy. We have taken a few outings to get out and stretch my legs. My muscles are really weak and I know I should be exercising more but my motivation is low. It would be nice to have a trainer or therapist come over and just tell me what to do, but that is one more thing to deal with and I really do know how to exercise - I just need to do it!
I am excited to get home tomorrow and see Brant and the kids. It will be nice to get back into the family things. It has seemed like a long week away from home. But we have had a nice stay and I am grateful for all that the nurses and doctors are doing to get me better.
Wednesday, April 9, 2014
A Rollercoaster Week & Living in Limbo
My biopsy went well last Monday without too much pain. Ruth and I had a nice trip up to Richmond. We had to wait some extra time because my Hgb was down to 7.3 and they waited to send my type & screen until after my labs were back which took forever. My labs were wacky in that my platelets went way up, but my WBCs plummeted. That was a little discouraging. So an hour wait for the type, then 2-1/2 hours to transfuse the blood, after getting the biopsy.... It was a long day! Maybe it was the fentonol, but I was in a good mood and chatted with several of my transplant friends. We did make it home by 5pm. On Tues it was such a pretty day I went walking twice around the block with a friend. But thru the rest of the week my energy seemed to drop.
On Friday Brant took me up to Richmond for a clinic check and preliminary biopsy results. My WBCs continued to drop, but my Hgb held and platelets went up. I was a little concerned when we got put in a consult room instead of an exam room. The Dr. came in to say that my blasts were at 60% after being <5% (normal) at my last biopsy. The doctor seemed as surprised as us with the results which the pathologist deemed as a major relapse of leukemia. He suspected maybe something else was going on since my counts in general were rising, and my bone marrow is now 100% donor which is a good thing. Last time there was about 17% of my stuff still lurking around. He ordered extra slide stains and said we would just have to wait and see. So it was a long weekend and we opted to not say much to the kids or update the blog since we didn't really know what was going on.
Over the weekend I got weaker and weaker. It is frustrating when you just want to get up and do stuff. I'm sure some of it was the mental load on us as well. I did enjoy sitting and watching Chris' volleyball tournament on Saturday. By Sunday I was so weak I made an appt in Richmond for Monday thinking I surely needed blood...plus I wanted to see if any more results came back.
Monday Mom took me back up to Richmond. I had lost 5 lbs over the weekend...not good. My Hgb was fine but I found out my liver enzymes have skyrocketed and they are thinking Graft vs Host where the donor cells are attacking my liver. They sent me home after stopping one med (again, I needed no repletions which is a good thing), but I wasn't happy at how cruddy I felt. I was due back on Wed to start my chemo and they will see then what my liver is doing.
On Tuesday, the Dr. called me twice to report that my additional tests, including the FISH and cytogenetics, had come back with no signs of Leukemia. This was pretty exciting. He thinks the blasts are my donor cells trying to make some new marrow, which is still pretty sparse, but a little better than last biopsy. It isn't a traditional way of seeing things, but since when have I been normal??? They will biopsy me again in a few weeks to see what all those blasts have done.... Hopefully grown into normal blood cells. The doctor still feels that the weakness and fatigue are a result of possible GVH of the liver. Even though I was still pretty weak I enjoyed watching Katie's volleyball match and passed out the team shirts. Don't even ask me how I got suckered into that one, but to her credit Katie did the majority of the work. I woke up the next day with sore triceps from folding the shirts while holding them up. Guess I haven't used those muscles in a while!
So today I am back at MCV for a week of chemo.... Just what I want to start when feeling like dirt...lol. My liver enzymes almost doubled since Monday and my blood pressure was below 90. So it has been a busy day. I got fluids to plump me up, but again didn't need blood or platelets and my WBCs are starting to rise. The doctors decided to jump on the liver issue as though it is GVH without doing a biopsy since that is kind of invasive. I have a liver ultrasound tomorrow to rule out leukemia or infection in the liver. I have started a steroid, an IV anti fungal, and a mild immunosuupressant to beat back the donor cells a bit but hopefully not interfere with them keeping the leukemia away. And of course they are going to suck lots more vials of blood out of me to run more tests. We may make it back to the Hospitality House by 7:00pm - ha ha! But mom did say we got a sweet corner room with two beds (no cot for mom!) and a desk - wow! We must have hit the Platinum level based on our number of stays.
So that's the news from here. Lots of stuff going on, some sounds good, some may be a little scary. But it is always good to hear they don't see any leukemia. Hopefully treating my liver issues will get some of that energy back. One day at a time.... One prayer at a time.
On Friday Brant took me up to Richmond for a clinic check and preliminary biopsy results. My WBCs continued to drop, but my Hgb held and platelets went up. I was a little concerned when we got put in a consult room instead of an exam room. The Dr. came in to say that my blasts were at 60% after being <5% (normal) at my last biopsy. The doctor seemed as surprised as us with the results which the pathologist deemed as a major relapse of leukemia. He suspected maybe something else was going on since my counts in general were rising, and my bone marrow is now 100% donor which is a good thing. Last time there was about 17% of my stuff still lurking around. He ordered extra slide stains and said we would just have to wait and see. So it was a long weekend and we opted to not say much to the kids or update the blog since we didn't really know what was going on.
Over the weekend I got weaker and weaker. It is frustrating when you just want to get up and do stuff. I'm sure some of it was the mental load on us as well. I did enjoy sitting and watching Chris' volleyball tournament on Saturday. By Sunday I was so weak I made an appt in Richmond for Monday thinking I surely needed blood...plus I wanted to see if any more results came back.
Monday Mom took me back up to Richmond. I had lost 5 lbs over the weekend...not good. My Hgb was fine but I found out my liver enzymes have skyrocketed and they are thinking Graft vs Host where the donor cells are attacking my liver. They sent me home after stopping one med (again, I needed no repletions which is a good thing), but I wasn't happy at how cruddy I felt. I was due back on Wed to start my chemo and they will see then what my liver is doing.
On Tuesday, the Dr. called me twice to report that my additional tests, including the FISH and cytogenetics, had come back with no signs of Leukemia. This was pretty exciting. He thinks the blasts are my donor cells trying to make some new marrow, which is still pretty sparse, but a little better than last biopsy. It isn't a traditional way of seeing things, but since when have I been normal??? They will biopsy me again in a few weeks to see what all those blasts have done.... Hopefully grown into normal blood cells. The doctor still feels that the weakness and fatigue are a result of possible GVH of the liver. Even though I was still pretty weak I enjoyed watching Katie's volleyball match and passed out the team shirts. Don't even ask me how I got suckered into that one, but to her credit Katie did the majority of the work. I woke up the next day with sore triceps from folding the shirts while holding them up. Guess I haven't used those muscles in a while!
So today I am back at MCV for a week of chemo.... Just what I want to start when feeling like dirt...lol. My liver enzymes almost doubled since Monday and my blood pressure was below 90. So it has been a busy day. I got fluids to plump me up, but again didn't need blood or platelets and my WBCs are starting to rise. The doctors decided to jump on the liver issue as though it is GVH without doing a biopsy since that is kind of invasive. I have a liver ultrasound tomorrow to rule out leukemia or infection in the liver. I have started a steroid, an IV anti fungal, and a mild immunosuupressant to beat back the donor cells a bit but hopefully not interfere with them keeping the leukemia away. And of course they are going to suck lots more vials of blood out of me to run more tests. We may make it back to the Hospitality House by 7:00pm - ha ha! But mom did say we got a sweet corner room with two beds (no cot for mom!) and a desk - wow! We must have hit the Platinum level based on our number of stays.
So that's the news from here. Lots of stuff going on, some sounds good, some may be a little scary. But it is always good to hear they don't see any leukemia. Hopefully treating my liver issues will get some of that energy back. One day at a time.... One prayer at a time.
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