But will Spring every get here??? Seems like we get one or two nice days and then it is a cold and rainy again!! I think it will be here soon....and with it I am amazed that we are approaching the 1 year mark with this ordeal. And with no clear end in sight it gets even more important to just take it one day at a time.
My energy has returned about 50% I would say. Still not to the levels I felt in Jan/Feb, but much better than the beginning of the month. What is weird is that my counts have done really well compared to where I was. I haven't had platelets since Feb 22nd. They made it to a high of 96 but have hovered in the 30's and 40's recently. My blood transfusions are also stretching out, and my WBCs have touched 2.0 and are hovering around 1.8. That is much better than the 0.3, 0.5. and 0.8's I have seen mostly since October. It will be interesting to see what my counts are tomorrow, since I haven't been to clinic since Wednesday.
This weekend we took a trip from Thurs - Sun to Blacksburg. I was nervous being so far away and gone from clinic for so long. My HgB was 8.1 on Wed before I left. Even though they transfuse me at 8.0 they didn't want to give me blood and wanted to see how I would do. I was cleared for the trip but took it easy. It was nice to drop by and see some of my VDOT co-workers and finally get the last of my junk out of the office. In Blacksburg the kids visited with friends and we visited with a few friends as well. It was very emotional for me to be back in the place that we really loved but only got to have for a year. That "WHY WHY WHY" thing and a little bitterness definitely surfaced, but by the end of the weekend I found some peace again in not understanding but knowing the God has it in his hands. We have been very blessed here in Chesapeake and never would have been able to get through the last year as well as we have had we not moved back home.
Tomorrow my sister is taking me up to Richmond for clinic and a biopsy. I hope they get a good amount of material and can fully run all of the tests they need to. I am tentatively scheduled to start my next run of chemo on April 9th and then a DLI after that. This DLI is scheduled to be 4x greater than the last one - yikes! Anyway, I have a doctor's appt set up on Friday. I know they won't have all the results by then, but they will have some preliminary results and we can get the discussion started once again - delay chemo? stay on pace? super DLI? regular DLI?....there are four doctors, so I like to give them some time to all get together and discuss it. I am sure the biopsy results and my blood counts will be big factors in the decision.
I better head off and get some rest.
Sunday, March 30, 2014
Wednesday, March 19, 2014
Back at Home
I finished up my chemo run on Monday and was ready to come home. But I have been having problems with an elevated heart rate for a few weeks now, and on Monday in clinic it was 135 sitting and went up to 185 standing. Not really good. Mom was worried they would keep me in town while they set up an appt to see the cardiologist. But in a total "God-thing", Mom ran into my cardiologist near the cafeteria and he asked how I was. When she mentioned my heart rate he said "that's no good" and was up to see me in clinic in less than an hour. They put me on another heart med - I take one to keep my blood pressure up and now I take one to keep my heart rate down. Ugh...I guess it is all of the chemo that has messed with my heart. They said to come back to clinic and a cardiology appointment on Thursday, so I got to go home.
As of clinic on Monday, my blood counts were still doing pretty good. My WBCs made it up to 1.9 and then back to 1.7. My platelets had fallen back to 63 but were up to 75 again. So things are bouncing around, but that is a lot more cells than I have had in the past. The chemo usually hits them over the next week, so I won't be surprised to see them drop. I just hope there is good recovery in time for my next biopsy. It would be nice to not have such empty bone marrow this time.
It is wonderful being home, but my energy has still not returned. The achiness and fevers seem to be better the last few days and I am taking less Tylenol. But I get exhausted just walking from one room to the other. I really don't know what that is about. I have also been dropping weight and have lost my appetite. It is hard to force myself to eat, but I know that the calories are important. Thank goodness for nutritional drinks to fill in some between meals.
This has been a kinda downer post, maybe I should share some good stuff. We are finally getting a few of our rooms in the house painted. I'm not sure how great I did on picking out the colors, but at least it is fresh and new! Katie made the middle school volleyball team and was elected by her teammates to be one of the two captains. Chris is doing well with his travel volleyball team. He is also finishing up an orcehstra project where he composes the orchestra parts (violin,viola, and cello) for a modern song. He picked "21 Guns" by Greenday and it sounds really awesome. He and Katie both really love music....very different types, but enjoy it non the less.
Well, it feels like time for a nap...lol. Lately it has always felt like time for a nap!
As of clinic on Monday, my blood counts were still doing pretty good. My WBCs made it up to 1.9 and then back to 1.7. My platelets had fallen back to 63 but were up to 75 again. So things are bouncing around, but that is a lot more cells than I have had in the past. The chemo usually hits them over the next week, so I won't be surprised to see them drop. I just hope there is good recovery in time for my next biopsy. It would be nice to not have such empty bone marrow this time.
It is wonderful being home, but my energy has still not returned. The achiness and fevers seem to be better the last few days and I am taking less Tylenol. But I get exhausted just walking from one room to the other. I really don't know what that is about. I have also been dropping weight and have lost my appetite. It is hard to force myself to eat, but I know that the calories are important. Thank goodness for nutritional drinks to fill in some between meals.
This has been a kinda downer post, maybe I should share some good stuff. We are finally getting a few of our rooms in the house painted. I'm not sure how great I did on picking out the colors, but at least it is fresh and new! Katie made the middle school volleyball team and was elected by her teammates to be one of the two captains. Chris is doing well with his travel volleyball team. He is also finishing up an orcehstra project where he composes the orchestra parts (violin,viola, and cello) for a modern song. He picked "21 Guns" by Greenday and it sounds really awesome. He and Katie both really love music....very different types, but enjoy it non the less.
Well, it feels like time for a nap...lol. Lately it has always felt like time for a nap!
Friday, March 14, 2014
Vidaza Round #6
It is hard to believe that I am already 6 months into this treatment. I tell everyone that January and February were great months - lots of energy, mostly at home, almost normal..... March is a bit more difficult to define. I continue to have fatigue and achiness. I thought the fevers were gone, but I am still running low grade temps that occasionally spike to over 100. On the other hand, my platelets went almost to 100 before drifting back down,. They were 76 today. My WBCs have been climbing. I made it to 1.4 (I've been around 0.5 - 0.7). My HgB still follows the same pattern with a transfusion every week to week and a 1/2. They are the slowest cells to recover if my bone marrow ever gets going.
I met with the doctor yesterday. He said the achiness can be due to my bone marrow starting to produce more cells. Some of them can give off inflammatory stuff that can cause fevers and achiness that could continue for a few more weeks. I could also be having a little Graft vs Host in my muscles, but lab results didn't support that theory too much. It could be the leukemia, but there are no markers in my bloodstream and the only way to really check is a bone marrow biopsy. As of now my next one is scheduled for the first week in April. He suggested using the Tylenol more frequently to keep the fevers and achiness away and see how things develop.
Mom & I are in Richmond for seven days getting my Vidaza treatments. Today was #4 so only three more doses (days) to go. It has been nice watching my blood counts rise, but soon they will likely drop from the Vidaza, making it further difficult to know what is going on. This is definitely one of those times I really wish I had a crystal ball. But instead I remind myself to keep faith, keep hope and keep trust in God. The worrying will not change what is going on inside my body one bit....well, actually worrying can make things worse with stress. Just take it one day at a time!
Our stay here at the Hospitality House hasn't been too bad. We have had two nice meals served by volunteer groups which makes the cooking easy. It is funny when people think we are "new" to the place now that we are only coming once a month. Either my mom or both of us have kinda been here off and on since last April...... Many of our close friends have gone back home by now, but we still run into them in the clinic occasionally. We are sort of like the transplant class of July/Aug /Sep'13.
For all the prayer warriors - thank-you and please send prayers for more energy and that the cause of my fatigue and pain is for good reasons. Pray that those stem cells that seem to have taken hold will weather this round of Vidaza and keep on cranking. We pray for you all as well and thank God for your devotion to us.
I met with the doctor yesterday. He said the achiness can be due to my bone marrow starting to produce more cells. Some of them can give off inflammatory stuff that can cause fevers and achiness that could continue for a few more weeks. I could also be having a little Graft vs Host in my muscles, but lab results didn't support that theory too much. It could be the leukemia, but there are no markers in my bloodstream and the only way to really check is a bone marrow biopsy. As of now my next one is scheduled for the first week in April. He suggested using the Tylenol more frequently to keep the fevers and achiness away and see how things develop.
Mom & I are in Richmond for seven days getting my Vidaza treatments. Today was #4 so only three more doses (days) to go. It has been nice watching my blood counts rise, but soon they will likely drop from the Vidaza, making it further difficult to know what is going on. This is definitely one of those times I really wish I had a crystal ball. But instead I remind myself to keep faith, keep hope and keep trust in God. The worrying will not change what is going on inside my body one bit....well, actually worrying can make things worse with stress. Just take it one day at a time!
Our stay here at the Hospitality House hasn't been too bad. We have had two nice meals served by volunteer groups which makes the cooking easy. It is funny when people think we are "new" to the place now that we are only coming once a month. Either my mom or both of us have kinda been here off and on since last April...... Many of our close friends have gone back home by now, but we still run into them in the clinic occasionally. We are sort of like the transplant class of July/Aug /Sep'13.
For all the prayer warriors - thank-you and please send prayers for more energy and that the cause of my fatigue and pain is for good reasons. Pray that those stem cells that seem to have taken hold will weather this round of Vidaza and keep on cranking. We pray for you all as well and thank God for your devotion to us.
Saturday, March 8, 2014
An Interesting Week
I have had several days since last Friday where I was very achy and low on energy. On Sunday I realized I was running a low grade fever (99's) and that I felt worse in the evenings. This is a pattern that scares me because it is what I had last September when the leukemia returned. On Tuesday Mom & I went up to Richmond for clinic. My platelets were 76! My Hgb dropped to 8.0 and my WBCs were slightly up to 0.6. I met with the doctor and they want to hold off on my next round of chemo a few days to see if my counts recover a little more. He didn't have much to say about the aches and fevers....
We went home and that evening my temperature climbed to almost 101. So I had to call in to clinic. Luckily Tylenol brought the fever down and I did not have to go to the local ER. We did, however, have to report back to clinic on Wednesday morning. With the icy roads, Brant took the day off so he could be with me. They did all sorts of cultures on me checking for an infection. My platelets were at 96 so they are going crazy. My HgB dropped to 7.6 so I got a transfusion of blood. And those stubborn WBCs were back down to 0.5. Not much to do but wait and see if the cultures grow anything so we headed back home.
Thursday was an achy day but my fever was not as high. Friday was a good day and my fever didn't start until 7pm and went down on it's own. Today has been another achy day but not much fever. We were up in Richmond for Chris' volleyball tournament and I got my labs checked. My platelets were 93 - down slightly but still up there. My Hgb went to 9.1 after that transfusion on Wed. and my WBCs were up to 0.7. None of the cultures came back positive so no viral or bacterial infections that they could detect.
So I don't know what to think. There are good and bad things going on at the same time. I do miss the energy that I seemed to have thru January and February. I go back to clinic on Tuesday and will likely start my week of Vidaza chemo then. I think the plan is to skip doing a DLI this month and to then see where I am at after my next biopsy in about a month.
Brant and the kids have been so great as I have been spending more time on the sofa and have stolen Katie's electric blanket. Max the cat really likes it too. I enjoy being able to see the kids off to school in the morning and having dinner together most nights. So even though I don't feel my best, I still love being home.
We went home and that evening my temperature climbed to almost 101. So I had to call in to clinic. Luckily Tylenol brought the fever down and I did not have to go to the local ER. We did, however, have to report back to clinic on Wednesday morning. With the icy roads, Brant took the day off so he could be with me. They did all sorts of cultures on me checking for an infection. My platelets were at 96 so they are going crazy. My HgB dropped to 7.6 so I got a transfusion of blood. And those stubborn WBCs were back down to 0.5. Not much to do but wait and see if the cultures grow anything so we headed back home.
Thursday was an achy day but my fever was not as high. Friday was a good day and my fever didn't start until 7pm and went down on it's own. Today has been another achy day but not much fever. We were up in Richmond for Chris' volleyball tournament and I got my labs checked. My platelets were 93 - down slightly but still up there. My Hgb went to 9.1 after that transfusion on Wed. and my WBCs were up to 0.7. None of the cultures came back positive so no viral or bacterial infections that they could detect.
So I don't know what to think. There are good and bad things going on at the same time. I do miss the energy that I seemed to have thru January and February. I go back to clinic on Tuesday and will likely start my week of Vidaza chemo then. I think the plan is to skip doing a DLI this month and to then see where I am at after my next biopsy in about a month.
Brant and the kids have been so great as I have been spending more time on the sofa and have stolen Katie's electric blanket. Max the cat really likes it too. I enjoy being able to see the kids off to school in the morning and having dinner together most nights. So even though I don't feel my best, I still love being home.
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