I did make it home last Friday after leaving the hospital for my DLI boost. I don't know what is in George's little bag of cells, but for one day I have enough energy to feel like a normal human being!! We had a great day together on Saturday after being apart for eight days. We even got to celebrate Christmas once again since we had missed seeing Brant's dad over the holidays. Although the "high" doesn't last, I have to say I have been feeling very good over the last week. And I have been home every night!
Brant drove me up to clinic on Sunday and I didn't need anything! First time in forever. But unfortunately I think the last chemo run is kicking in, and by my clinic visit on Tuesday my platelets had dropped off quite a bit. On Thursday I went to the local oncologist and infusion clinic to get platelets and blood. It wasn't the smoothest experience, but I think it is just getting the kinks out. It would be nice to go to Richmond once per week and do clinic down here twice a week when I am just doing transfusions.
So January has definitely felt a lot better than December. I hope it is a good sign that the Vidaza/DLI combo is working. George has his flights booked for a two week visit in February to donate some more of those DLI cells. He is so awesome. My biopsy in February will hopefully give us some good information on what the leukemia is doing.
The doctor at Duke encouraged me to have a regular exercise routine to build my strength (especially cardio). While I was at the Hospitality House for the week I used their treadmill each day. Here at home I figure I am up and down the steps enough, but would like it to warm up a little so I could walk outside.
We have had snow on the ground since Tuesday night. Dad got me home from clinic on Tuesday just before it arrived!! The kids have had two snow days this week and have enjoyed the extra sleep. And I have enjoyed the extra time with them. We just keep taking it one day at a time and I am thankful that lately the days have felt pretty good and the bad thoughts have mostly stayed away. Keep praying! God can do miracles!
Friday, January 24, 2014
Friday, January 17, 2014
TGIF
It has been a long week in Richmond going to clinic each day for my Vidasa chemo treatments. But mom and I have held up well and are looking forward to the weekend. I am typing this from the hospital room since I just had my DLI dose (Booster cells from George). They admit you into the hospital to do the procedure but you don't stay overnight. Right now I am waiting on a bag of platelets and then hopefully mom & I will be headed home for the weekend. :) :)
Next up, it is three weeks of recovery from the chemo followed by a bone marrow biopsy to see if we are making any progress. I am praying that this treatment will show some improvements and we can continue on this course for a while. Since that was my last bag of cells, it looks like George will be headed over again in February to donate some more "goods". My counts have showed some positive trends in the last two weeks. Nothing earth shattering, but my platelets and blood are lasting longer between transfusions and my white count is trying to creep out of the cellar. Hopefully this trend will continue.
Not much else new here. Thanks again for all the support.
Next up, it is three weeks of recovery from the chemo followed by a bone marrow biopsy to see if we are making any progress. I am praying that this treatment will show some improvements and we can continue on this course for a while. Since that was my last bag of cells, it looks like George will be headed over again in February to donate some more "goods". My counts have showed some positive trends in the last two weeks. Nothing earth shattering, but my platelets and blood are lasting longer between transfusions and my white count is trying to creep out of the cellar. Hopefully this trend will continue.
Not much else new here. Thanks again for all the support.
Friday, January 10, 2014
Tour de Cancer Centers
I have been doing pretty well since getting out of the hospital on Jan 2nd. We stayed in Richmond after my discharge to make sure my cold was improving. If I went home I knew I would be exposed to more things and wouldn't be able to sit still. Remember how I said those IV antibiotic balls were so cool? Well they got old really quickly since I had to do 5 of them a day. It seemed like something was always needing to be taken out of the fridge, hooked up, disconnected and flushed, and if I needed to go somewhere....packing up was a task! It kind of reminded me of when you have a newborn and there is so much to do all the time and you aren't 100% sure of what you are doing! I finished those off on Wednesday and was switched to just a pill antibiotic for prevention purposes. So far my cold symptoms have continued somewhat, but no fevers or sinusitis.
This past week Brant and I went to both Johns Hopkins and Duke. It was a lot of driving and two nights in hotels that didn't help with getting rid of my cold. Brant is a great driver and we were blessed with little traffic and good weather (but cold!!!). Both facilities were new and very attractive (sad there is so much money in cancer.....). Both doctors we met with were very good and spent a good deal of time talking with us. It was good to do this type of investigation while I am still under a treatment plan (Vidaza). Both doctors said that Vidaza with DLIs is what I would be doing at their institutions. It is not uncommon for the blood counts to remain very low for quite a while and still end up having positive results. The 4-6 month range on this treatment plan is where they start making some decisions if it is working.
So our discussions were more based around what are the next options if Vidaza doesn't work. Both docs agreed that more toxic chemo isn't the best option for me even though that is what is readily available. Leukemia research is focusing on more targeted therapies and interrupting the cellular pathways of specific leukemia cells. It is very cool stuff, but unfortunately, most of it is in early development with mostly Phase 1 trials and maybe a few Phase 2 trials. It is nice to know we have some options for down the road, but we didn't hear anything that would have us change course right now.
In between days at the cancer centers I was at clinic or at home. Ruth took me up one day, and Dad did another. Mom decided to share my cold with me and took the week off to stay home and rest. It was nice to be home a few nights and to see the kids. Ruth moved in as Aunt Nanny and made sure there was some stability for the kids as we came and went. It helped a lot. Thanks!!! This morning Mom & I packed up for a week in Richmond. I started Round 4 of Vidaza today and will have a bone marrow biopsy in early February to see how things are going. I am hoping I can spend most of the three week Vidaza-recovery time at home, but I know better than to plan on it! We are just taking it one day at a time and trying to be as healthy & germ-free as possible.
This past week Brant and I went to both Johns Hopkins and Duke. It was a lot of driving and two nights in hotels that didn't help with getting rid of my cold. Brant is a great driver and we were blessed with little traffic and good weather (but cold!!!). Both facilities were new and very attractive (sad there is so much money in cancer.....). Both doctors we met with were very good and spent a good deal of time talking with us. It was good to do this type of investigation while I am still under a treatment plan (Vidaza). Both doctors said that Vidaza with DLIs is what I would be doing at their institutions. It is not uncommon for the blood counts to remain very low for quite a while and still end up having positive results. The 4-6 month range on this treatment plan is where they start making some decisions if it is working.
So our discussions were more based around what are the next options if Vidaza doesn't work. Both docs agreed that more toxic chemo isn't the best option for me even though that is what is readily available. Leukemia research is focusing on more targeted therapies and interrupting the cellular pathways of specific leukemia cells. It is very cool stuff, but unfortunately, most of it is in early development with mostly Phase 1 trials and maybe a few Phase 2 trials. It is nice to know we have some options for down the road, but we didn't hear anything that would have us change course right now.
In between days at the cancer centers I was at clinic or at home. Ruth took me up one day, and Dad did another. Mom decided to share my cold with me and took the week off to stay home and rest. It was nice to be home a few nights and to see the kids. Ruth moved in as Aunt Nanny and made sure there was some stability for the kids as we came and went. It helped a lot. Thanks!!! This morning Mom & I packed up for a week in Richmond. I started Round 4 of Vidaza today and will have a bone marrow biopsy in early February to see how things are going. I am hoping I can spend most of the three week Vidaza-recovery time at home, but I know better than to plan on it! We are just taking it one day at a time and trying to be as healthy & germ-free as possible.
Thursday, January 2, 2014
Released!!!
They let me leave today! I had a great nurse on Monday night, they are all good, but she was determined to get me a good night rest with no pain. Things seemed to turn the corner after that, and I woke up feeling good with much less pain. I am still coughing and blowing my nose a lot, but feel much better. The fevers are also a concern, but they have stayed away for the last 36 hours. So they let me go down the street to the Hospitality House. They checked me for just about everything, but the main concern was fungal infections. They are hard to treat and can appear when you have no immune system. So far, everything looks good. Let's just hope it is an expensive cold.
In addition to a new antifungal pill, I am on two IV antibiotics for about 5 more days. They are these little balls of medicine that when you attach one to your port, the medicine gets sucked in over about 45 mins. I think it is a pretty slick way to do IV meds at home without a nurse or Gertrude(IV pole). Sorry if I mentioned that before. I am also now a firm believer in nasal rinses with sterile saline. It is kinda awkward and takes a little practice, but I wonder how many head colds I could have relieved doing that! And the hospital has the perfect sized syringes and saline that doesn't burn.
So Happy New Year! Brant and I had probably our oddest one yet. He drove up to Richmond and spent the night in the hospital with me. I'm not sure how much rest he got, but it was nice to greet 2014 with him. The care partner brought us some chocolate milkshakes and mom had left us two little party favors. Thanks, Ruth, for doing New Years Eve with our kids. It was disappointing to lose the last week of the holidays to this illness, but I was where I needed to be.
Next week will be a big one for us. We have consults at both Johns Hopkins and Duke. We ask for your prayers - safety on the roads, that my sinusitis will continue to improve and I will have strength, that the doctors will have good options, and that Brant and I will have God's hand upon us as we decide where the path will lead next.
Love you all.
In addition to a new antifungal pill, I am on two IV antibiotics for about 5 more days. They are these little balls of medicine that when you attach one to your port, the medicine gets sucked in over about 45 mins. I think it is a pretty slick way to do IV meds at home without a nurse or Gertrude(IV pole). Sorry if I mentioned that before. I am also now a firm believer in nasal rinses with sterile saline. It is kinda awkward and takes a little practice, but I wonder how many head colds I could have relieved doing that! And the hospital has the perfect sized syringes and saline that doesn't burn.
So Happy New Year! Brant and I had probably our oddest one yet. He drove up to Richmond and spent the night in the hospital with me. I'm not sure how much rest he got, but it was nice to greet 2014 with him. The care partner brought us some chocolate milkshakes and mom had left us two little party favors. Thanks, Ruth, for doing New Years Eve with our kids. It was disappointing to lose the last week of the holidays to this illness, but I was where I needed to be.
Next week will be a big one for us. We have consults at both Johns Hopkins and Duke. We ask for your prayers - safety on the roads, that my sinusitis will continue to improve and I will have strength, that the doctors will have good options, and that Brant and I will have God's hand upon us as we decide where the path will lead next.
Love you all.
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