What a difference a week makes! Last Sunday we were getting ready for Christmas in our shorts, this Sunday I am back on the Transplant Floor being treated for sinusitis. I'm going with the theory that some dust blew in my face when we I opened a window last weekend to enjoy the day. In hindsight, maybe I shouldn't have done that, Brant and the kids will do anything I ask, but it is hard not to do it yourself when you are feeling good.
So the sneezing and runny nose started on Monday, and by Christmas Eve night I was starting to feel kind of run down. We had a wonderful Christmas morning together and had dinner later with some of Brant's family, but I was tired and the whole right side of my face hurt, especially around my eye.. We came back up to Richmond for clinic on Thursday and Friday and they checked me out really well, and started me on antibiotics. I felt ok to come home Friday afternoon but should have trusted my gut and stayed. I was in miserable pain most of the time. Then I spiked a fever yesterday afternoon and that couldn't be ignored.
So back we came to Richmond last night and I was admitted. Even though it was 8:00 pm at night on a Saturday, my doctor came in so he could "lay eyes on me" and make sure everything was ok. They can get a lot done really fast when you are inpatient. I had an MRI of my head late last night. They had to stop and restart because they said I was moving - which I was sure I wasn't. But then I figured out that I was dozing off and twitching. It is hard to stay awake when it is almost 1:00 am and you have received Benadryl two hours earlier! I have never had an MRI before and this machine was loud. They put ear plugs in you. And the whole table shakes and vibrates at times with no warning. I felt like I was on Mr. Toad's Wild Ride at Disney.
Today I was seen by an opthamologist since my right eye feels like it has been punched. I am still recovering from the dilation so this post may have more than the usual amount of typos. Then the ENT doctor came and scoped up my nose. That was fun......not. Everyone is concerned about a fungal infection but so far, it looks like an expensive case of sinusitis Apparently, a white cell count of 0.3 is not sufficient to fight it off myself, so I will be staying here a few days getting IV antibiotics and good care. I will miss being at home with Brant and the kids, but am very thankful that we have had so much time together in recent weeks. It is a good wake-up call that I am still very sick and need to very careful.....no more sneaking out to stores or trying to clean.
I hope everyone had a great Christmas and is ready to start a new year - 2014!! Even though I get really down sometimes and just want life to be "like it was", we have experienced so many blessings this past year that only happen when things get really tough. So we look forward to 2014 as a year to keep fighting and finding ways to enjoy life "like it is".
Sunday, December 29, 2013
Saturday, December 21, 2013
Enjoying the Holidays
After my really rough week I have had several really great days. I was discharged Monday evening following my DLI infusion. Even though it wasn't home, I was SO happy to be at the Hospitality House for the night and to take a HOT shower with water pressure....something the hospital apparently frowns upon. At clinic on Tuesday I only needed platelets. My hemoglobin actually went up. I think the DLI definitely gave me some energy. We were able to leave the clinic early and I got home before the school buses and was able to surprise the kids.
Since Tuesday I have been home every night but have "commuted" to clinic in Richmond every other day for platelets and blood (if needed). My electrolyte levels have been pretty good which is nice because a run of potassium takes one hour to go in and the minimum number of runs is two...so the time can add up quickly! Dad took me to clinic on Thursday and Brant took me today. I like to spread the driving time around...lol.
Mom has had a much needed break from me although she hasn't relaxed too much. Her Food Ministry with the church prepared 117 Christmas food baskets to distribute to families today and that doesn't include the 90+ seniors that she delivered food to at a housing complex on Thursday (a monthly routine). Hopefully she will take a little rest now. My sister Ruth has been splitting time helping Mom with her food madness and "babysitting" me and also helping with our kids.
So the holidays are here and although it is a pared down version this year (think one box of decorations instead of 10), we are having a really nice time. I enjoyed decorating the Christmas tree more than usual this year as each ornament from our 20 years seemed to be extra special. They are a pretty even mix of ones we have bought to commentate milestones and vacations alongside the ones we have received as gifts from friends and family. We had a really nice dinner with two of our "beach families" the other night and for just a bit, life seemed pretty normal. I have sneaked into a few stores (don't report me) thanks to Ruth and Brant, but have pretty much been taking it easy at home.
My pain level is almost zero and I have a decent appetite once again. I get tired quickly and my low platelets show up with some annoying skin spots (petechia) and bleeding gums, but otherwise I am feeling very good. I never really reported my November biopsy results because they were kind of inconclusive. My bone marrow is very "empty" so there isn't much to analyze. Things can be interpreted as good: the blasts in the marrow only went up slightly, and my chimerisms for blood and T-cells went back to 100% George (some of my material had sneaked in according to the October biopsy). There are things that could be interpreted as bad: my blasts went up instead of down, my chimerism for bone marrow ticked up slightly from 4.5% me to 7.5% me. With so little material in the marrow sample, the doctor said it really wasn't enough to hang your hat on one way or the other, but you can always choose to focus on the positives. The Vidaza treatment is a slow one and it really takes a several months to see if it is working. At least it does appear to be holding the leukemia at bay for now. Brant and I will be going to both Duke and Johns Hopkins in January to get consults with Leukemia specialists. My doctors and the staff at VCU have been great about helping us line this up and getting my information sent to each center. We look forward to hearing their assessments of my situation.
Sorry to wrap things up with medical stuff, but I knew some of you must be wondering where I was at with things. For now I am trying to take a mental break from it all and enjoy the holidays. It has been easier to be positive lately with so few aches/pains and being at HOME with the family. If I don't get a chance to write again before the 25th, I hope everyone has a very Merry Christmas. We will be taking time to remember and be thankful for the gift of Christ's birth.
Since Tuesday I have been home every night but have "commuted" to clinic in Richmond every other day for platelets and blood (if needed). My electrolyte levels have been pretty good which is nice because a run of potassium takes one hour to go in and the minimum number of runs is two...so the time can add up quickly! Dad took me to clinic on Thursday and Brant took me today. I like to spread the driving time around...lol.
Mom has had a much needed break from me although she hasn't relaxed too much. Her Food Ministry with the church prepared 117 Christmas food baskets to distribute to families today and that doesn't include the 90+ seniors that she delivered food to at a housing complex on Thursday (a monthly routine). Hopefully she will take a little rest now. My sister Ruth has been splitting time helping Mom with her food madness and "babysitting" me and also helping with our kids.
So the holidays are here and although it is a pared down version this year (think one box of decorations instead of 10), we are having a really nice time. I enjoyed decorating the Christmas tree more than usual this year as each ornament from our 20 years seemed to be extra special. They are a pretty even mix of ones we have bought to commentate milestones and vacations alongside the ones we have received as gifts from friends and family. We had a really nice dinner with two of our "beach families" the other night and for just a bit, life seemed pretty normal. I have sneaked into a few stores (don't report me) thanks to Ruth and Brant, but have pretty much been taking it easy at home.
My pain level is almost zero and I have a decent appetite once again. I get tired quickly and my low platelets show up with some annoying skin spots (petechia) and bleeding gums, but otherwise I am feeling very good. I never really reported my November biopsy results because they were kind of inconclusive. My bone marrow is very "empty" so there isn't much to analyze. Things can be interpreted as good: the blasts in the marrow only went up slightly, and my chimerisms for blood and T-cells went back to 100% George (some of my material had sneaked in according to the October biopsy). There are things that could be interpreted as bad: my blasts went up instead of down, my chimerism for bone marrow ticked up slightly from 4.5% me to 7.5% me. With so little material in the marrow sample, the doctor said it really wasn't enough to hang your hat on one way or the other, but you can always choose to focus on the positives. The Vidaza treatment is a slow one and it really takes a several months to see if it is working. At least it does appear to be holding the leukemia at bay for now. Brant and I will be going to both Duke and Johns Hopkins in January to get consults with Leukemia specialists. My doctors and the staff at VCU have been great about helping us line this up and getting my information sent to each center. We look forward to hearing their assessments of my situation.
Sorry to wrap things up with medical stuff, but I knew some of you must be wondering where I was at with things. For now I am trying to take a mental break from it all and enjoy the holidays. It has been easier to be positive lately with so few aches/pains and being at HOME with the family. If I don't get a chance to write again before the 25th, I hope everyone has a very Merry Christmas. We will be taking time to remember and be thankful for the gift of Christ's birth.
Monday, December 16, 2013
Double DLI Received Today
It has been a long few days in the hospital (since last Thursday night). We have made good progress on my backside issues and I have only needed to use Tylenol a few times for pain since Saturday night. It has been a very humbling experience and certainly not something I was expecting to deal with (physically or emotionally) at this point in the process. But mom has been a trooper getting me thru and providing private duty nursing care....and reminding me of all the people that are pulling for me. There are no signs of infection and I seem to be doing some healing despite my very limited white count. Brant and the kids came up to visit on Saturday even though I thought they should just rest and get caught up at home. But he knew I needed the boost and we had some good laughs and a game of Bananagrams.
The nurses and doctors are so great around here. It is a bummer to be in the hospital, but they really do try to make it as pleasant as possible and each is gifted in their own way. You know you have been here too long when most of your nurses already know you and others drop by to say hi. I did have a new nurse on CC2 who recently graduated from UVA (I didn't hold that against her). It reminded me that nursing really is a great profession that I think people often overlook. It is a unique mix of science and people skills...and it isn't just for women. I have had some wonderful male nurses here as well. OK...done with that PR plug....
They moved me up to the transplant floor (North 10) on Saturday night when a bed became available and they decided to keep me thru the weekend since I needed to be in the hospital today for my DLI. I received a double dose of the donor booster cells around 2pm today. That means I have now used three of the four doses they put on ice. It was nice to hear the nurse and NP call out George's name as they went over their safety checks before giving me the infusion: "Donor - George Brisbin, Medical record #....." I did pretty well with the infusion that lasted maybe ten minutes. There is a preservative in the cells that smells awful and I can taste it. I had gum and ginger ale handy to try to mask it. I am praying hard that those little guys get to work...making my bone marrow a little stronger and finding some leukemia cells to take out.
If all goes well I will head to clinic tomorrow and then home for a day or two. Some time at the house with the family would do a lot for me right now. And for Brant and the kids, too. Of course nothing is ever for certain and my electrolyte levels probably need to be stable before they let me go too far.
Here are a few of the family pics:
The nurses and doctors are so great around here. It is a bummer to be in the hospital, but they really do try to make it as pleasant as possible and each is gifted in their own way. You know you have been here too long when most of your nurses already know you and others drop by to say hi. I did have a new nurse on CC2 who recently graduated from UVA (I didn't hold that against her). It reminded me that nursing really is a great profession that I think people often overlook. It is a unique mix of science and people skills...and it isn't just for women. I have had some wonderful male nurses here as well. OK...done with that PR plug....
They moved me up to the transplant floor (North 10) on Saturday night when a bed became available and they decided to keep me thru the weekend since I needed to be in the hospital today for my DLI. I received a double dose of the donor booster cells around 2pm today. That means I have now used three of the four doses they put on ice. It was nice to hear the nurse and NP call out George's name as they went over their safety checks before giving me the infusion: "Donor - George Brisbin, Medical record #....." I did pretty well with the infusion that lasted maybe ten minutes. There is a preservative in the cells that smells awful and I can taste it. I had gum and ginger ale handy to try to mask it. I am praying hard that those little guys get to work...making my bone marrow a little stronger and finding some leukemia cells to take out.
If all goes well I will head to clinic tomorrow and then home for a day or two. Some time at the house with the family would do a lot for me right now. And for Brant and the kids, too. Of course nothing is ever for certain and my electrolyte levels probably need to be stable before they let me go too far.
Here are a few of the family pics:
Thursday, December 12, 2013
Home Sweet Home.....Then Back to Richmond
I finished up my 7th day of Vidaza chemo on Tuesday. Afterwards they gave me a double bag of platelets and sent me on my way. Mom drove us on home and we arrived in time to make Katie's winter chorus concert. It was really nice to hear them all sing Christmas music - they did a great job. And it is hard to believe she is an 8th grader and will be at the high school with her brother next year!
The plan was to spend Tuesday and Wednesday night at home, and attend Chris' orcehstra concert on Wednesday. Unfortunately the pain in my backside has gotten very bad and it is hard to control the pain with Tylemol and Dilaudid. I have been struggling trying to get used to the pain med, but it doesn't seem to help that much and yesterday (Wednesday) it made me very sick. So I couldn't make Chris' concert which was very upsetting, but I did get to see him head off in his tux - oh wow, he is so grown up and handsome. Brant said they did a really great job.
Mom & I left this morning after kissing the kids goodbye as they went to school. It took an extra hour to get here due to an accident on the one day I didn't check Google maps for traffic issues. That really felt good on my bum - not!! I was pretty much in agony by the time we got here and one of the Nurse Practiioners checked me out. She was concerned that my hemorroid has progressed into a wound that isn't healing (due to low white counts) and so they started me on antibiotics and planned to admit me. Well, the whole hospital is full - seriously - so I got my first round of three different antibiotics and then some platelets in clininc and then they sent me "home" to the Hospitality House. Home health delivered my antibiotics so I could take them on my own. Mom was fixing an awesome dinner (it isn't easy to fix steak on a hot plate) when they called to say a room opened up on Critcal Care 2. So we ate quickly and then headed over to the hospital. I am all settled in on the floor where I started my treatments back in April. It is nice seeing some of my old nurses and the rooms are definitely nicer here than on the transplant floor. Maybe I can use the treadmill again for fun! But the doctors from the transplant floor will still be covering my care while I am here.
My pain is much better tonight. They switched me from Dilaudid to Morphine. Dilaudid is supposed to be stronger, but apparently not in my system. It made me loopy but I still felt the pain just fine. The morphine has taken my pain without needing a super heavy dose. I am supposed to get a consult tomorrow with an oncology surgeon and maybe also the wound care team. I am hopeful that they will get this problem under control so I don't need any pain meds and I can focus my healing energies on leukemia.
I was hoping to be home again this weekend, but that isn't looking too promising. Honestly I am so worn out from the pain that I am happy to stay here and get the issues resolved. It will be much nicer to be at home when I am feeling better. Thanks for the continued support - I love the comments I get here on the blog as well as the emails and texts sent my way. And everytime I go home there is a nice stack of cards or a package waiting for me. I am so blessed with such support!! Love you all!
The plan was to spend Tuesday and Wednesday night at home, and attend Chris' orcehstra concert on Wednesday. Unfortunately the pain in my backside has gotten very bad and it is hard to control the pain with Tylemol and Dilaudid. I have been struggling trying to get used to the pain med, but it doesn't seem to help that much and yesterday (Wednesday) it made me very sick. So I couldn't make Chris' concert which was very upsetting, but I did get to see him head off in his tux - oh wow, he is so grown up and handsome. Brant said they did a really great job.
Mom & I left this morning after kissing the kids goodbye as they went to school. It took an extra hour to get here due to an accident on the one day I didn't check Google maps for traffic issues. That really felt good on my bum - not!! I was pretty much in agony by the time we got here and one of the Nurse Practiioners checked me out. She was concerned that my hemorroid has progressed into a wound that isn't healing (due to low white counts) and so they started me on antibiotics and planned to admit me. Well, the whole hospital is full - seriously - so I got my first round of three different antibiotics and then some platelets in clininc and then they sent me "home" to the Hospitality House. Home health delivered my antibiotics so I could take them on my own. Mom was fixing an awesome dinner (it isn't easy to fix steak on a hot plate) when they called to say a room opened up on Critcal Care 2. So we ate quickly and then headed over to the hospital. I am all settled in on the floor where I started my treatments back in April. It is nice seeing some of my old nurses and the rooms are definitely nicer here than on the transplant floor. Maybe I can use the treadmill again for fun! But the doctors from the transplant floor will still be covering my care while I am here.
My pain is much better tonight. They switched me from Dilaudid to Morphine. Dilaudid is supposed to be stronger, but apparently not in my system. It made me loopy but I still felt the pain just fine. The morphine has taken my pain without needing a super heavy dose. I am supposed to get a consult tomorrow with an oncology surgeon and maybe also the wound care team. I am hopeful that they will get this problem under control so I don't need any pain meds and I can focus my healing energies on leukemia.
I was hoping to be home again this weekend, but that isn't looking too promising. Honestly I am so worn out from the pain that I am happy to stay here and get the issues resolved. It will be much nicer to be at home when I am feeling better. Thanks for the continued support - I love the comments I get here on the blog as well as the emails and texts sent my way. And everytime I go home there is a nice stack of cards or a package waiting for me. I am so blessed with such support!! Love you all!
Wednesday, December 4, 2013
Round 3 Begins
Sorry to not be very active on the blog lately. Since they have let me go home more I have found that I am on computers less....:) This is a good thing. Mom and I drove back up to Richmond this morning and I started my third round of Vidaza chemo today.
The last week was very nice with Thanksgiving holiday and my oldest brother John still in town from Australia. He and Brant took a couple of turns driving me up an back to Richmond for clinic repletions, so Mom was actually able to stay back home for almost two weeks. And I have only spent a few nights in Richmond over the last few weeks.
What we have been up to: We had a wonderful Thanksgiving meal over at my parents house. We got our family pictures back from the photographer and she did a nice job. I will try to post a few here before too long, but many of you have already seen them on Facebook. I was home long enough for the kids to complain about my nagging (ah...normalcy!). I have enjoyed sleeping in my own bed!! We got the Christmas tree down and put up (a pre-lit variety) but not quite decorated yet. We had homemade pizza night with after dinner music from Chris and Katie as our send off to Uncle John. In short, it has been a very nice week.
Now for the boring medical stuff. My energy level and appetite dropped this last week. I am hopeful that another round of Vidaza and a DLI will pick me back up to where I was at in mid-November. Also plaguing me with severe pain this last week is an issue not nice for discussion on a public blog, but it starts with a big ol' H and many women deal with them during/after pregnancy. I myself have never endured this pain before and am not happy about it being thrown into the mix. Especially since my platelets are so low that they are limited in what procedures they will even try. I actually got a script for pain meds (something I have only taken a few times in the hospital) and have been trying everything they suggest. But so far, no improvement.
And that is also the story for my blood counts, no improvement. Kind of depressing but not unexpected. The Vidaza is very slow acting. I had hoped to get some biopsy news today but with the holidays things are slow. I will meet with Dr. Chung and talk about results and treatment options next week. If we need to switch to something more intense, it would be nice to wait until after the holidays. I could get used to this little one week of treatment and 3 weeks mostly at home to recover. But with cancer, waiting is not always an option. We have some names of Leukemia specialists at both Duke and Johns Hopkins and may take some time in December to discuss my case and treatment options with them.
I hope everyone is getting ready for a fabulous holiday season. My hope is that you will put spending good times with your family and friends ahead of the shopping and decorating and chaos that the retail world strongly suggests we must do for a "successful;" holiday. Each day holds so many little blessings but they are easy to miss.... so take time to notice them.
The last week was very nice with Thanksgiving holiday and my oldest brother John still in town from Australia. He and Brant took a couple of turns driving me up an back to Richmond for clinic repletions, so Mom was actually able to stay back home for almost two weeks. And I have only spent a few nights in Richmond over the last few weeks.
What we have been up to: We had a wonderful Thanksgiving meal over at my parents house. We got our family pictures back from the photographer and she did a nice job. I will try to post a few here before too long, but many of you have already seen them on Facebook. I was home long enough for the kids to complain about my nagging (ah...normalcy!). I have enjoyed sleeping in my own bed!! We got the Christmas tree down and put up (a pre-lit variety) but not quite decorated yet. We had homemade pizza night with after dinner music from Chris and Katie as our send off to Uncle John. In short, it has been a very nice week.
Now for the boring medical stuff. My energy level and appetite dropped this last week. I am hopeful that another round of Vidaza and a DLI will pick me back up to where I was at in mid-November. Also plaguing me with severe pain this last week is an issue not nice for discussion on a public blog, but it starts with a big ol' H and many women deal with them during/after pregnancy. I myself have never endured this pain before and am not happy about it being thrown into the mix. Especially since my platelets are so low that they are limited in what procedures they will even try. I actually got a script for pain meds (something I have only taken a few times in the hospital) and have been trying everything they suggest. But so far, no improvement.
And that is also the story for my blood counts, no improvement. Kind of depressing but not unexpected. The Vidaza is very slow acting. I had hoped to get some biopsy news today but with the holidays things are slow. I will meet with Dr. Chung and talk about results and treatment options next week. If we need to switch to something more intense, it would be nice to wait until after the holidays. I could get used to this little one week of treatment and 3 weeks mostly at home to recover. But with cancer, waiting is not always an option. We have some names of Leukemia specialists at both Duke and Johns Hopkins and may take some time in December to discuss my case and treatment options with them.
I hope everyone is getting ready for a fabulous holiday season. My hope is that you will put spending good times with your family and friends ahead of the shopping and decorating and chaos that the retail world strongly suggests we must do for a "successful;" holiday. Each day holds so many little blessings but they are easy to miss.... so take time to notice them.
Wednesday, November 27, 2013
Having Fun....Happy Thanksgiving
My big brother John is in town from Australia. He has been shuttling me back and forth to Richmond which has allowed Mom to have an extended break back home with Dad. It has been fun with a new caregiver - even though Mom left him a six page list of instructions, we have made up our own rules - lol.... It is so nice to have been able to spend time with all of my siblings over the last few months.I love being home so often. I was home last weekend and then came home after clinic on Monday. We went up and back today (Wednesday) and will be home tomorrow for Thanksgiving and hopefully thru Saturday. It was a long day with two bags of platelets, a unit of blood, and a biopsy. John did a great job getting me there and back in all the rain and also hanging out while I snoozed under the influence of lots of drugs. I'm not sure when I will get the results of my biopsy. I am discouraged with so many weeks of low counts that I am really not expecting too much. But it would be nice if it showed that the Vidaza and DLI is knocking back the leukemia.
Back home we have been enjoying time together. My energy level has been much better, but I still don't do too much. With such low white blood cells I don't need to encourage a cold or infection. On Sunday Brant and I celebrated our 20th anniversary. I asked to have some family photos as our anniversary gift, so on Saturday we went out to Bennett's Creek Park with a photographer. Even though not everyone was crazy about my request, they all humored me and I hope one or two photos come out nicely. Even with my GI Jane haircut. On Sunday, the kids helped me get my wedding dress zipped up. Brant was very surprised when we walked into the living room. I can't believe it has been 20 years!! I am so blessed to have him and he has been my rock thru this journey!
Wednesday, November 20, 2013
Feeling Better...but Still Low Counts
First the good news.... I have been feeling a lot better since my last round of Vidaza and the DLI dose last Thursday. I went home for the weekend and had a great time. My energy level was much better, I even took a walk around the block with Brant. My sister made us the most fantastic dinner on Friday night. I enjoyed just being home without feeling totally wiped out. Brant did take me for my Coke Slurpee and it was awesome!
So the bad news is that my blood counts have not gotten the memo that I am doing better. They are still very low - although I came back from the weekend and my platelets were still at 11 - double digits!! My hemoglobin and WBCs were low and I got a transfusion of blood on Monday but no platelets. They gave me the day off on Tuesday, but I started having some bleeding Monday night so I went in on Tuesday for platelets...the were at 6. Tuesday afternoon and evening I took doses of Amicar because I was still having some bleeding and it is supposed to help. I hate that stuff. I have only taken it a few times, but each time the next day I am very lightheaded and have almost passed out....
I woke up around 5:30 this morning to go to the bathroom and made it just inside the door before fainting. It happened so fast I didn't really feel it coming. Luckily mom is a light sleeper and heard the "thud". I was very blessed to not be injured, just a sore butt cheek. Guess I fell with grace...lol. I really could have been hurt if my head hit that tile floor. That earned me an ambulance ride to the ER and then an admission to Floor 10 to see my good transplant nurses and doctors. Poor mom, I think I aged her another 5 years again!
The ER was not impressive this morning. It took almost 20 minutes for them to start some fluids on me (it really should have been done in the ambulance but we were only 5 blocks away). My blood pressure was in the low 80s/40s range. Mom was beside herself with the lack of speed and was asking for the number to the head of the hospital. She would have connected the bag of saline herself if she could find it. I think there may be a picture of her on the ER wall of irrational family members to watch out for. She really did have a point and they didn't treat her well at all. But I finally got my bolus of fluid and was quickly sent up to the 10th floor.
I feel much better now as I sit here in my hospital bed wide awake from the steroid meds they gave me. I had a transfusion of blood and some platelets during the day. My blood pressure has come up some and we will see what the doctors have to say tomorrow. I am hoping they will let me go and tell me to never take Amicar again. I am still hopeful I can come home for the weekend, but obviously that will depend on how I am doing. I think the Vidaza is having some positive impacts on my disease but I just hope it is enough. I worry about the number of transfusions I receive, but I leave it up to the Big Man to look out for me. I have faith that miracles can happen and this body can recover.
So the bad news is that my blood counts have not gotten the memo that I am doing better. They are still very low - although I came back from the weekend and my platelets were still at 11 - double digits!! My hemoglobin and WBCs were low and I got a transfusion of blood on Monday but no platelets. They gave me the day off on Tuesday, but I started having some bleeding Monday night so I went in on Tuesday for platelets...the were at 6. Tuesday afternoon and evening I took doses of Amicar because I was still having some bleeding and it is supposed to help. I hate that stuff. I have only taken it a few times, but each time the next day I am very lightheaded and have almost passed out....
I woke up around 5:30 this morning to go to the bathroom and made it just inside the door before fainting. It happened so fast I didn't really feel it coming. Luckily mom is a light sleeper and heard the "thud". I was very blessed to not be injured, just a sore butt cheek. Guess I fell with grace...lol. I really could have been hurt if my head hit that tile floor. That earned me an ambulance ride to the ER and then an admission to Floor 10 to see my good transplant nurses and doctors. Poor mom, I think I aged her another 5 years again!
The ER was not impressive this morning. It took almost 20 minutes for them to start some fluids on me (it really should have been done in the ambulance but we were only 5 blocks away). My blood pressure was in the low 80s/40s range. Mom was beside herself with the lack of speed and was asking for the number to the head of the hospital. She would have connected the bag of saline herself if she could find it. I think there may be a picture of her on the ER wall of irrational family members to watch out for. She really did have a point and they didn't treat her well at all. But I finally got my bolus of fluid and was quickly sent up to the 10th floor.
I feel much better now as I sit here in my hospital bed wide awake from the steroid meds they gave me. I had a transfusion of blood and some platelets during the day. My blood pressure has come up some and we will see what the doctors have to say tomorrow. I am hoping they will let me go and tell me to never take Amicar again. I am still hopeful I can come home for the weekend, but obviously that will depend on how I am doing. I think the Vidaza is having some positive impacts on my disease but I just hope it is enough. I worry about the number of transfusions I receive, but I leave it up to the Big Man to look out for me. I have faith that miracles can happen and this body can recover.
Thursday, November 14, 2013
DLI Day
Today I received my fist DLI dose. That stands for "Donor Leukocyte Infusion" but Brant renamed it "Destroy Leukemia Immediately". These are the t-cells that they extracted from my brother's blood that he gave back in July. Besides the stem cell transplant material which I received the day after he donated, they also collected extra stuff and filtered out the t-cells into 4 doses of DLI's. They have been sitting on ice - really cold ice. I meant to take a picture of the infusion but it was over in about five minutes. There is a preservative in the bag that tasted really bad (yes, I tend to "taste" things that are going in my IV). I almost gagged and he took a break with the infusion, but a piece of mint gum later I was fine and we made it the rest of the way thru. The hope is that the t-cells will seek out and destroy any bad cells (leukemia). The Vidaza chemo that I am taking makes it a little easier for the t-cells to find the leukemia. The DLI/Vidaza combo is not always effective, but is my best shot for right now. I am doing lots of visualization today imagining those little cells getting to work.
Other than that, not too much to report. My counts are still low and not showing any signs of moving up. This treatment is not a fast one....often people try it for 6 months unless the leukemia progresses. The doctors are keeping an eye on that with my daily blood samples.
They gave me the day off from clinic yesterday and we enjoyed a change in the routine and scenery. I wanted to walk some but it was very cold so we went to a mall and had a stroll. There really aren't many people around in the middle of a work day! Even though Dr. Chung said I could lift most of my food restrictions, I am still pretty picky about what I will eat since my white count is low. But I did opt to have a fresh batch of french fries from one of the burger places iu the food court and it was well worth it. I think mom was happy to see me enjoying to eat something! The drive home down Monument Ave was really pretty with fall leaves and a crisp blue sky. It sure beat sitting in a recliner getting platelets!
Tomorrow is Friday and if all goes well I should be able to go home for the weekend after a clinic visit. I can't wait to see Brant and the kids!
Other than that, not too much to report. My counts are still low and not showing any signs of moving up. This treatment is not a fast one....often people try it for 6 months unless the leukemia progresses. The doctors are keeping an eye on that with my daily blood samples.
They gave me the day off from clinic yesterday and we enjoyed a change in the routine and scenery. I wanted to walk some but it was very cold so we went to a mall and had a stroll. There really aren't many people around in the middle of a work day! Even though Dr. Chung said I could lift most of my food restrictions, I am still pretty picky about what I will eat since my white count is low. But I did opt to have a fresh batch of french fries from one of the burger places iu the food court and it was well worth it. I think mom was happy to see me enjoying to eat something! The drive home down Monument Ave was really pretty with fall leaves and a crisp blue sky. It sure beat sitting in a recliner getting platelets!
Tomorrow is Friday and if all goes well I should be able to go home for the weekend after a clinic visit. I can't wait to see Brant and the kids!
Sunday, November 10, 2013
Weekends are the Best
I didn't get to go home this weekend because I am taking Vidaza chemo daily in clinic. But Mom & I headed out after clinic on Friday and surprised Chris by showing up for the conference championship game since the tournament was in WAAAY northern Newport News and barely an hour drive from here. Western Branch won - woot woot! It was fun to get to go to a volleyball match. They advanced to the zone tournament next week. Good Luck! (Chris is front row, second from left, #18)
Afterwards, mom went on home for the weekend and Brant and the kids took me back to Richmond. We stayed together in a hotel and had a really nice time. The kids and Brant came with me to clinic on Saturday. It is pretty quiet on the weekends and we sort of took over the Infusion Room. Katie gets a kick out of pushing me around in a wheelchair - even when I can walk!!! Chris was so nice chatting with me while I had to sit in the chair. One of my fellow transplanters who was there said how much Chris seemed to enjoy talking with me and how nice our kids are. :) After clinic, it was great to come back to the hotel and watch a big Hokie win over Miami!!
So I don't really know where I am at with stuff. I will probably talk to the doctors more this week. My fever and aches got really bad the first few days of Vidaza and I was having to take Tylenol every six hours. But it seems to be better since the weekend and I am stretching it out to 8-9 hours now. I guess if the doctors think the Vidaza is working I will get a DLI boost later this week. That is an extra batch of my brother's donor cells. If they don't think the Vidaza is working then I need to start induction chemo of some sort to get rid of the leukemia.
My blood counts have been pretty low. I get platelets every day and was doing the < 5 routine again for several days. They sent my blood to Wisconsin (again) to be analyzed for matched platelets. Then they sent six potential platelet samples out there to see if they would work. I was antibody resistant to all of them. So after all of that effort, Virginia Blood Services recommends that I get random pooled platelets (which is what I was already getting!!) Oh well, at least they tried. The good news is that yesterday my platelets were 9 and today they were 12, so maybe I am climbing back up there. My white blood cells are about 0.5 and I get red blood cells about every 5 days. I am what they call "transfusion dependent". (This is another plug for you all to donate blood whenever you get the chance!!)
It was tough to say good-bye to the family today, but our new motto is - "just gotta make it to next weekend". My sister came up for a night and is hanging out with me until mom comes back tomorrow. Katie sent me the sweetest text on her way home. She is a natural encourager. She sent one of my favorite verses to me - '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. She admits she doesn't understand what good there is in this situation but says she knows there is a plan for this family and God will see us through it.
Afterwards, mom went on home for the weekend and Brant and the kids took me back to Richmond. We stayed together in a hotel and had a really nice time. The kids and Brant came with me to clinic on Saturday. It is pretty quiet on the weekends and we sort of took over the Infusion Room. Katie gets a kick out of pushing me around in a wheelchair - even when I can walk!!! Chris was so nice chatting with me while I had to sit in the chair. One of my fellow transplanters who was there said how much Chris seemed to enjoy talking with me and how nice our kids are. :) After clinic, it was great to come back to the hotel and watch a big Hokie win over Miami!!
So I don't really know where I am at with stuff. I will probably talk to the doctors more this week. My fever and aches got really bad the first few days of Vidaza and I was having to take Tylenol every six hours. But it seems to be better since the weekend and I am stretching it out to 8-9 hours now. I guess if the doctors think the Vidaza is working I will get a DLI boost later this week. That is an extra batch of my brother's donor cells. If they don't think the Vidaza is working then I need to start induction chemo of some sort to get rid of the leukemia.
My blood counts have been pretty low. I get platelets every day and was doing the < 5 routine again for several days. They sent my blood to Wisconsin (again) to be analyzed for matched platelets. Then they sent six potential platelet samples out there to see if they would work. I was antibody resistant to all of them. So after all of that effort, Virginia Blood Services recommends that I get random pooled platelets (which is what I was already getting!!) Oh well, at least they tried. The good news is that yesterday my platelets were 9 and today they were 12, so maybe I am climbing back up there. My white blood cells are about 0.5 and I get red blood cells about every 5 days. I am what they call "transfusion dependent". (This is another plug for you all to donate blood whenever you get the chance!!)
It was tough to say good-bye to the family today, but our new motto is - "just gotta make it to next weekend". My sister came up for a night and is hanging out with me until mom comes back tomorrow. Katie sent me the sweetest text on her way home. She is a natural encourager. She sent one of my favorite verses to me - '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. She admits she doesn't understand what good there is in this situation but says she knows there is a plan for this family and God will see us through it.
Tuesday, November 5, 2013
Not the Greatest of News....Not the Worst Either
Well today was my doctor appointment to hear results from last week's biopsy. Brant took off 1/2 day so he could be up here with me & mom when we met with Dr. Chung. The leukemia is trying to make a comeback. I have 20% blast cells showing in my marrow now, which is right on the borderline for being considered leukemia. He discussed my options and still wants to try one more cycle of Vidasa chemo. During the first cycle I was "immunosuppressed", but I finished being tapered off of those drugs on Oct 31. So during this cycle of Vidasa I will have my full immune system working to help fight off the leukemia. If the chemo goes pretty well, I will get a booster of my brother's donor cells (called a DLI) shortly after finishing my 7 days of Vidasa and then see if it can take on the leukemia.
Using Vidasa preserves the donor graft (ie, my brothers cells that have set up shop). The next option is back to some cocktail of Induction chemo that wipes out everything and try for a transplant with an unrelated donor. That doesn't sound like much fun, and I would have the option to try a clinical trial instead. But our motto is Step by Step, Day by Day, and that means that tomorrow is Day 1 of Vidasa and I don't need to be looking down the road too far.
The Dr. also took me off almost all restrictions as I am technically no longer "immunosuprressed". In part because I think he wants me to enjoy things as much as possible, and for another part he wants my immune system to experience things and get fired up. So Brant and I went out for dinner after I finished in clinic. It was nothing fancy or exciting, but I did enjoy a fountain drink!! He headed back home to be with the kids which is so tough because he wants to stay in Richmond to be with me. As much as I would like him by my side (we are such a team), I take comfort knowing that he is the one tucking in our kids at night and saying good morning to them before school. If only he could clone himself!
Have I mentioned that I am really tired of being sick and weak? The leukemia is causing me to have fevers and aches so I take Tylenol about once every 9-10 hours. God gives us strength when we are at our weakest and my faith continues despite not knowing what His plans are or why I am on this path. I believe in miracles and will continue to fight and be as strong as I can. Your thoughts and prayers lift me up as always, thank you all for being my "army" on this journey,
Using Vidasa preserves the donor graft (ie, my brothers cells that have set up shop). The next option is back to some cocktail of Induction chemo that wipes out everything and try for a transplant with an unrelated donor. That doesn't sound like much fun, and I would have the option to try a clinical trial instead. But our motto is Step by Step, Day by Day, and that means that tomorrow is Day 1 of Vidasa and I don't need to be looking down the road too far.
The Dr. also took me off almost all restrictions as I am technically no longer "immunosuprressed". In part because I think he wants me to enjoy things as much as possible, and for another part he wants my immune system to experience things and get fired up. So Brant and I went out for dinner after I finished in clinic. It was nothing fancy or exciting, but I did enjoy a fountain drink!! He headed back home to be with the kids which is so tough because he wants to stay in Richmond to be with me. As much as I would like him by my side (we are such a team), I take comfort knowing that he is the one tucking in our kids at night and saying good morning to them before school. If only he could clone himself!
Have I mentioned that I am really tired of being sick and weak? The leukemia is causing me to have fevers and aches so I take Tylenol about once every 9-10 hours. God gives us strength when we are at our weakest and my faith continues despite not knowing what His plans are or why I am on this path. I believe in miracles and will continue to fight and be as strong as I can. Your thoughts and prayers lift me up as always, thank you all for being my "army" on this journey,
Thursday, October 31, 2013
Trick or Treat
Hope everyone had a nice Halloween. I guess parts of the country had pretty bad weather and some bummed-out little ones. Mom & I had our holiday fun by making this "Monster Fruit Salad" to take into the clinic for our wonderful nurses and other staff. Don't you just love the internet? You can find all sorts of neat ideas.Clinic went pretty well today. My platelets dropped from 28 to 18. That was kind of disappointing, but at least they weren't less than 5. I got a transfusion of platelets that only bumped me up to 21. I think they are starting to work on finding me matched platelets again. My hemoglobin held at 10.1 which is pretty high for me, but my white blood cell count is still low and didn't show any signs of coming up. I go back again tomorrow and I really hope they will "plump me up" and send me home for the weekend.
Mom and I enjoyed the day off yesterday. I slept in and took a nap. Yes, it was pretty industrious of me. We did take our afternoon walk around the Coliseum and we were able to go again today before any rain moved into the area. It would be nice to have a higher energy level, but I guess I need to quit complaining about it. My body has been beat up and needs rest.
No news from the biopsy. I will probably schedule an appointment with the doctor for early next week when we can discuss results and hopefully Brant can be here with me. I am supposed to start my second cycle of Vidasa chemo next week, but I don't know how they can do that if my counts are still low. It would be nice to have another week to recover.
That's it for today...I need to go check out the Brain HQ website my brother has given me a subscription to...and is bugging me to get logged on. Doesn't he know I am "really" busy with my naps and all????
Tuesday, October 29, 2013
Biopsy Day
After my post last Friday I had another weekend with continued low counts. They did let me go home after clinic on Saturday but I was back in Richmond by Sunday evening. It is a lot less nerve-wracking when you are just down the street from your doctors and nurses. The 24 hour visit home was worth it though. Just to be with the kids and Brant in our home feels so good. I know it has to be therapeutic!
On Monday morning at clinic I was very dizzy and had low blood pressure. My platelet count was below 5 and I was having some bleeding again. They were talking about admitting me again....ugh! But they gave me a unit of blood and a unit of platelets and then did a re-check of my platelet level. They bounced up to 27 - woot woot! That was good enough to let me go back to the Hospitality House and to keep my biopsy on schedule for today. This morning my lab work showed my platelets at 28...it is the first time they have held in a while - yea!! My HgB and WBC count also inched up a little. I'm trying not to get too excited, but I am hopeful that this is a sign my counts are on the rise.
They did my biopsy today. It was probably the worst one I have had because it took several tries to get a good sample. They gave me good drugs, but they aren't that good and it was pretty uncomfortable. Of course, it made me worry that something is wrong with my marrow since it has never been a problem before getting a sample.... I know, I know....worrying is a waste of time and does no good so I have tried to let it go. I probably won't have results until next week. Waiting is hard, but we are used to it.
Since my counts were so good, they let me have a day off from clinic tomorrow. I look forward to sleeping in. Other than a very sore hip, I felt pretty good this afternoon. Mom and I took a walk around the Coliseum - it has been a while since we could do that. I enjoyed seeing the knockout rose bushes that are STILL covered in blooms. I am tempted to plant some in our yard when I make it home, but I have a sneaking feeling they won't do as well under my care.
Well it is off to bed for me. Today was the first day in a while that I didn't have a transfusion...so I didn't get any steroids either. I am actually sleepy before midnight!
On Monday morning at clinic I was very dizzy and had low blood pressure. My platelet count was below 5 and I was having some bleeding again. They were talking about admitting me again....ugh! But they gave me a unit of blood and a unit of platelets and then did a re-check of my platelet level. They bounced up to 27 - woot woot! That was good enough to let me go back to the Hospitality House and to keep my biopsy on schedule for today. This morning my lab work showed my platelets at 28...it is the first time they have held in a while - yea!! My HgB and WBC count also inched up a little. I'm trying not to get too excited, but I am hopeful that this is a sign my counts are on the rise.
They did my biopsy today. It was probably the worst one I have had because it took several tries to get a good sample. They gave me good drugs, but they aren't that good and it was pretty uncomfortable. Of course, it made me worry that something is wrong with my marrow since it has never been a problem before getting a sample.... I know, I know....worrying is a waste of time and does no good so I have tried to let it go. I probably won't have results until next week. Waiting is hard, but we are used to it.
Since my counts were so good, they let me have a day off from clinic tomorrow. I look forward to sleeping in. Other than a very sore hip, I felt pretty good this afternoon. Mom and I took a walk around the Coliseum - it has been a while since we could do that. I enjoyed seeing the knockout rose bushes that are STILL covered in blooms. I am tempted to plant some in our yard when I make it home, but I have a sneaking feeling they won't do as well under my care.
Well it is off to bed for me. Today was the first day in a while that I didn't have a transfusion...so I didn't get any steroids either. I am actually sleepy before midnight!
Friday, October 25, 2013
It Was a Long Week
After returning from my awesome visit back home, it was back to long daily clinic visits for repletions - I get platelets and potassium daily and have needed blood and magnesium some too. They said this chemo was "mild" but it has knocked my blood counts down pretty good. My platelets seem to be the worst of the group. They were at 6 on Monday, but have stayed pretty much below 5 the rest of the week. On Wednesday I started having some bleeding that got everyone excited and they admitted me back up on the 10th floor to get some more platelets overnight and to "keep an eye on me". They let me go on Thursday so it was a quick visit - just long enough to check in with a few of the nurses and to remember that the food really isn't very good.
My platelets are still low but no more bleeding. Apparently after transplant I am still very refractory to platelets, so when they give me a transfusion it really doesn't bump them up much and they are gone the next day. Hopefully there will be some signs of recovery in the next few days and my bone marrow will start producing cells again more consistently. My bone marrow biopsy is scheduled for Tuesday and the doctors will be able to tell better what is going on when they get those results.
Mom and I are doing pretty good. She is such a strong woman going thru this with me. It is a tough time as we wait to see what is going to happen and when my body will recover. I am weaker than I would like to be, but I get a steroid shot before my platelet transfusions each day and that does give me some energy. I joke that they are my PEDs. I may be disqualified from any cancer records due to my doping....
Brant took off from work and drove up to surprise me in clinic today. He seems to know when I need a little boost. I will see him and the kids again at some point this weekend. It will be nice to catch up on their week. Katie had her last softball game - they honored the 8th graders and Brant was there to be on the field with her. Chris had his first orchestra concert as a high schooler. He looked really nice in his tux. It is hard missing so many events, but I appreciate all of the pictures and texts that people send to keep me in the loop.
My new quote (which sadly I saw on TV from the teacher's facebook page that was killed this week):
"Not every day is a good day....but there is good in every day."
My platelets are still low but no more bleeding. Apparently after transplant I am still very refractory to platelets, so when they give me a transfusion it really doesn't bump them up much and they are gone the next day. Hopefully there will be some signs of recovery in the next few days and my bone marrow will start producing cells again more consistently. My bone marrow biopsy is scheduled for Tuesday and the doctors will be able to tell better what is going on when they get those results.
Mom and I are doing pretty good. She is such a strong woman going thru this with me. It is a tough time as we wait to see what is going to happen and when my body will recover. I am weaker than I would like to be, but I get a steroid shot before my platelet transfusions each day and that does give me some energy. I joke that they are my PEDs. I may be disqualified from any cancer records due to my doping....
Brant took off from work and drove up to surprise me in clinic today. He seems to know when I need a little boost. I will see him and the kids again at some point this weekend. It will be nice to catch up on their week. Katie had her last softball game - they honored the 8th graders and Brant was there to be on the field with her. Chris had his first orchestra concert as a high schooler. He looked really nice in his tux. It is hard missing so many events, but I appreciate all of the pictures and texts that people send to keep me in the loop.
My new quote (which sadly I saw on TV from the teacher's facebook page that was killed this week):
"Not every day is a good day....but there is good in every day."
Sunday, October 20, 2013
A Wonderful Weekend at Home!
Last week the doctors decided that a trip home would be some good medicine for me. I wasn't sure that it would work out since my counts have been low and I haven't been feeling too great. But the nurses seemed determined to carry out "doctor's orders" and pumped me up with "two of everything" on Friday and told me to get out of here and enjoy the weekend.
Mom and I made it home by 5:30. The James River never looked so beautiful as we crossed the Monitor Merrimac bridge and knew we were almost there. It was a surprise for the kids and they were so happy to walk in the family room and see me sitting there. I didn't have a ton of energy, but it doesn't take much to cuddle, watch movies, and be waited on by Brant and the kids. :) We had a wonderful family dinner on Saturday and Brant's mom was able to make it over to visit. It was also nice to see a few friends who dropped by, but we kept it pretty quiet since a lot of company was not what I needed. And to sleep in my own bed...after three months.....heaven! It was hard to leave today, but how can you really be that upset when we got a weekend we weren't expecting?!?
We made it safely back to Richmond by 7:00pm this evening. It will be off to clinic tomorrow for what I expect to be a long day of getting repletions after two days on my own. The nadir (low point) for this chemo should be sometime this week so I am hoping we will start to see some improvements in my blood counts before the end of the week. But as always, I know not to expect recovery too quickly.
I brought a whole lot of positive energy back with me and really think the visit home helped me get mentally "back in the game". It just felt so right to be with the family that I know I am going to get back there soon! Thanks for all the encouragement and prayers. In the last week I have had two sets of friends drop by in Richmond and offer up powerful ones for me. Love you guys!!
Mom and I made it home by 5:30. The James River never looked so beautiful as we crossed the Monitor Merrimac bridge and knew we were almost there. It was a surprise for the kids and they were so happy to walk in the family room and see me sitting there. I didn't have a ton of energy, but it doesn't take much to cuddle, watch movies, and be waited on by Brant and the kids. :) We had a wonderful family dinner on Saturday and Brant's mom was able to make it over to visit. It was also nice to see a few friends who dropped by, but we kept it pretty quiet since a lot of company was not what I needed. And to sleep in my own bed...after three months.....heaven! It was hard to leave today, but how can you really be that upset when we got a weekend we weren't expecting?!?
We made it safely back to Richmond by 7:00pm this evening. It will be off to clinic tomorrow for what I expect to be a long day of getting repletions after two days on my own. The nadir (low point) for this chemo should be sometime this week so I am hoping we will start to see some improvements in my blood counts before the end of the week. But as always, I know not to expect recovery too quickly.
I brought a whole lot of positive energy back with me and really think the visit home helped me get mentally "back in the game". It just felt so right to be with the family that I know I am going to get back there soon! Thanks for all the encouragement and prayers. In the last week I have had two sets of friends drop by in Richmond and offer up powerful ones for me. Love you guys!!
Monday, October 14, 2013
One More Day of Chemo...then Waiting
Tomorrow is my last day of Vidaza chemo. It hasn't been too bad, but chemo is chemo and my platelet counts have stayed low. We are hoping that during the next three week recovery period we will see those counts go back up. I have had some long days in the clinic getting repletions of whatever happens to be low - mostly platelets and potassium, but there has been a bag of blood and some fluids and magnesium in there too. Again - thank you to all the blood donors out there!!!
I have had some great caregiving the last week. Ruth was up here a few days last week while mom went home for a little break. Then Brant and the kids came up for the weekend. We stayed in a hotel to have a little space. It was wonderful to have a family meal together, watch movies, and just hang out in general. If only we could move the Massey Cancer Center to Norfolk! The kids and Brant are being so strong to go thru this separation. It really isn't easy but I know God is with them. And we certainly cherish our time together more than ever.
There isn't too much else to report. I will be getting a biopsy on Oct 28th to see if the chemo is having any impact. Please pray hard for medicine and miracles to happen. We really won't know much until the first or second week in November. My job is to stay positive and fight, fight, fight!
I have had some great caregiving the last week. Ruth was up here a few days last week while mom went home for a little break. Then Brant and the kids came up for the weekend. We stayed in a hotel to have a little space. It was wonderful to have a family meal together, watch movies, and just hang out in general. If only we could move the Massey Cancer Center to Norfolk! The kids and Brant are being so strong to go thru this separation. It really isn't easy but I know God is with them. And we certainly cherish our time together more than ever.
There isn't too much else to report. I will be getting a biopsy on Oct 28th to see if the chemo is having any impact. Please pray hard for medicine and miracles to happen. We really won't know much until the first or second week in November. My job is to stay positive and fight, fight, fight!
Thursday, October 10, 2013
Day 2 of Chemo
FYI - If you receive this via email you didn't get my song link in the last post. Oops. At the bottom of the emails there is always a link to my blog page that you can click on and go to the web page. The song link does show up there! It was Kutless - What Faith Can Do.
It has been a tough few days as you might imagine. I have hopeful moments, then periods of fear. There are so many verses in the Bible that tell us not to fear, but it takes a lot of mental energy to turn your brain off sometimes and just focus on the now. Right now I am feeling about as cheerful as the weather outside (gray and raining all day), but I am happy that all those new plants at our house are getting a good soaking!
Brant has taken off work and driven up to be with me Tues, Wed, Thurs. It has been a very nice to have him with me in clinic. On Wednesday we met with one of the other doctors. There are four, they work as a team, but each has a little different style. Dr. Toor broke the news to us on Monday. Dr. Chung followed up on Wednesday confirming the game plan. There wasn't too much new, but he did emphasize the positive and said this is early and we have a good chance to wipe it out. I started my chemo yesterday. It is called Vidaza and only takes 20 minutes to infuse. Today was my second dose and I will take it for seven days. It is pretty mild and they don't expect me to feel many side effects. I am hoping I keep this lovely bit of hair that has grown back. Brant says I am at the Sigourney Weaver in Aliens stage right now.
All of my cultures and tests came back negative for any type of infection or virus. So I am off of the antibiotics again. Dr. Chung is pretty sure that the daily fever spike is related to the influence of the pre-leukemia cells working on the marrow. He went thru that pretty quick and I didn't really understand it too well. Something about things being released into the bloodstream that can cause a fever. I have also been very achey thru my lower back and my thighs. It is like I had a big workout yesterday and the muscles are sore. Dr. Chung thinks it is a bit of GVHD where the donor cells are attacking the connective tissue around the muscle fibers and irritate them. It is manageable with Tylenol. They actually want to see some GVHD so they know the donor cells are doing some attacking. Tomorrow I go down another 25mg on the immunosuppressant so those donor cells will have more freedom.
Thanks for all of the comments and texts and emails and messages sent my way. I was reminded by my brother that this is a gift to realize how many people love and care about us. I'm fighting each day to stay strong and positive. The army of support I have makes it so much easier! Thank you.
It has been a tough few days as you might imagine. I have hopeful moments, then periods of fear. There are so many verses in the Bible that tell us not to fear, but it takes a lot of mental energy to turn your brain off sometimes and just focus on the now. Right now I am feeling about as cheerful as the weather outside (gray and raining all day), but I am happy that all those new plants at our house are getting a good soaking!
Brant has taken off work and driven up to be with me Tues, Wed, Thurs. It has been a very nice to have him with me in clinic. On Wednesday we met with one of the other doctors. There are four, they work as a team, but each has a little different style. Dr. Toor broke the news to us on Monday. Dr. Chung followed up on Wednesday confirming the game plan. There wasn't too much new, but he did emphasize the positive and said this is early and we have a good chance to wipe it out. I started my chemo yesterday. It is called Vidaza and only takes 20 minutes to infuse. Today was my second dose and I will take it for seven days. It is pretty mild and they don't expect me to feel many side effects. I am hoping I keep this lovely bit of hair that has grown back. Brant says I am at the Sigourney Weaver in Aliens stage right now.
All of my cultures and tests came back negative for any type of infection or virus. So I am off of the antibiotics again. Dr. Chung is pretty sure that the daily fever spike is related to the influence of the pre-leukemia cells working on the marrow. He went thru that pretty quick and I didn't really understand it too well. Something about things being released into the bloodstream that can cause a fever. I have also been very achey thru my lower back and my thighs. It is like I had a big workout yesterday and the muscles are sore. Dr. Chung thinks it is a bit of GVHD where the donor cells are attacking the connective tissue around the muscle fibers and irritate them. It is manageable with Tylenol. They actually want to see some GVHD so they know the donor cells are doing some attacking. Tomorrow I go down another 25mg on the immunosuppressant so those donor cells will have more freedom.
Thanks for all of the comments and texts and emails and messages sent my way. I was reminded by my brother that this is a gift to realize how many people love and care about us. I'm fighting each day to stay strong and positive. The army of support I have makes it so much easier! Thank you.
Monday, October 7, 2013
Flirting with Fevers and Hitting a Speed Bump
First of all Happy Birthday to my parents! Yesterday was 75 for mom and today is 79 for Dad. Some people are funny about their age, but I think that it pretty impressive for them to hit these milestones. And I especially admire how much they still do each day to try to help others. Love you guys!!
So the chills/fevers have gotten a bit worse each day. The blood cultures (think science class petri dish experiment to see if bacteria grows) have continued to be negative. But over the weekend the fevers got high enough that I had to "call-in". I was worried they would re-admit me, but so far they have let it ride with some Tylenol and more tests. Today I saw the doctor and they started me on two antibiotics to see if it will help. I also had several other tests done and will get a CT scan this week. Hopefully they can identify the source of the fevers before too long. It is most likely why my platelet count has been dropping so much.
We also got some bad news today. My biopsy results came back and although there was no evidence of disease in the peripheral blood or the standard bone marrow slide, the much more sensitive FISH test detected about 5% of bone marrow cells with genetic mutations consistent with my leukemia. This is obviously not a great thing to hear at Day 68. We knew going in that secondary AML is a tough, resistant disease and that this transplant was in no way a guarantee to get rid of it. But when you are fighting so hard to stay positive and think about beating it, it is tough to hear it isn't going the way you had hoped.
The doctor was very good with me and said we will get thru this. It must take such special people to work in Oncology and to be so caring and supportive with the job they do. There are definitely treatment options that are effective and they did find it early on. So the game plan seems to be: first - take a few days to get the fevers under control and rule out any viruses/infections. Second - start me on a chemo that is targeted at trying to "re-program" the mutated cells. This chemo was developed by the Germans and is supposed to be pretty mild and has been effective in this situation. I will do it on an outpatient basis for one week, then take a three week break. Third - drop me off of immunosuppressant drugs pretty quickly to let the Graft vs Tumor (GVT) effect have a chance to kill some leukemia. That is where the donor T-cells would recognize the leukemia cells as bad and attack them. Ideally, the docs would like to wait another month before doing that because now I will be at higher risk of Graft vs Host Disease (GVHD) where the donor T-cells will see my normal organs as foreign and attack them too. But my donor cells came from a really smart dude, so I am praying that they only needed about 68 days to figure things out! Down the road I will likely get a boost of donor cells as well that are sitting on ice to help super-charge my cancer fighting immune system.
I have an awesome family and we all got a chance to chat tonight and encourage one another. Each sibling had something to say that gave me hope and support. Brant as always is my rock. We will get thru this. I turned on Pandora while sitting alone in the infusion room (Mom had stepped out to get me some lunch) and I heard several great songs. This one really stuck with me. I hope you will listen, too, because it really applies to all of us when things get tough.
Well I have had enough tears for today and am ready for bed and to wake up tomorrow to face a new challenge. Remember to be thankful for every day - the good ones and the bad ones.
So the chills/fevers have gotten a bit worse each day. The blood cultures (think science class petri dish experiment to see if bacteria grows) have continued to be negative. But over the weekend the fevers got high enough that I had to "call-in". I was worried they would re-admit me, but so far they have let it ride with some Tylenol and more tests. Today I saw the doctor and they started me on two antibiotics to see if it will help. I also had several other tests done and will get a CT scan this week. Hopefully they can identify the source of the fevers before too long. It is most likely why my platelet count has been dropping so much.
We also got some bad news today. My biopsy results came back and although there was no evidence of disease in the peripheral blood or the standard bone marrow slide, the much more sensitive FISH test detected about 5% of bone marrow cells with genetic mutations consistent with my leukemia. This is obviously not a great thing to hear at Day 68. We knew going in that secondary AML is a tough, resistant disease and that this transplant was in no way a guarantee to get rid of it. But when you are fighting so hard to stay positive and think about beating it, it is tough to hear it isn't going the way you had hoped.
The doctor was very good with me and said we will get thru this. It must take such special people to work in Oncology and to be so caring and supportive with the job they do. There are definitely treatment options that are effective and they did find it early on. So the game plan seems to be: first - take a few days to get the fevers under control and rule out any viruses/infections. Second - start me on a chemo that is targeted at trying to "re-program" the mutated cells. This chemo was developed by the Germans and is supposed to be pretty mild and has been effective in this situation. I will do it on an outpatient basis for one week, then take a three week break. Third - drop me off of immunosuppressant drugs pretty quickly to let the Graft vs Tumor (GVT) effect have a chance to kill some leukemia. That is where the donor T-cells would recognize the leukemia cells as bad and attack them. Ideally, the docs would like to wait another month before doing that because now I will be at higher risk of Graft vs Host Disease (GVHD) where the donor T-cells will see my normal organs as foreign and attack them too. But my donor cells came from a really smart dude, so I am praying that they only needed about 68 days to figure things out! Down the road I will likely get a boost of donor cells as well that are sitting on ice to help super-charge my cancer fighting immune system.
I have an awesome family and we all got a chance to chat tonight and encourage one another. Each sibling had something to say that gave me hope and support. Brant as always is my rock. We will get thru this. I turned on Pandora while sitting alone in the infusion room (Mom had stepped out to get me some lunch) and I heard several great songs. This one really stuck with me. I hope you will listen, too, because it really applies to all of us when things get tough.
Well I have had enough tears for today and am ready for bed and to wake up tomorrow to face a new challenge. Remember to be thankful for every day - the good ones and the bad ones.
Wednesday, October 2, 2013
Past Day 60.....
Sunday was my official Day 60 and on Monday I had a bone marrow biopsy and lots of blood tests for re-staging and checking on my progress. Of course, results won't be back until next week's doctor appointment so I am trying not to think about it too much. We are praying hard for good results and continued progress.
The last week has been somewhat eventful. I had my central line removed last Friday morning. I did not pass out despite only receiving local numbing with painful lidocaine shots. The whole process sort of freaked me out, but I have had it done before. So that hole in my chest is healing up and I now just have one access point for IVs - a port that is under my skin so much lower chance of infection. They also started me on antibiotics last Friday because a culture came back positive, but the re-cultures done the next day did not grow anything so they stopped my antibiotics on Sunday. I guess it was another false positive. I have been dealing with some afternoon chills and my temperature goes up but then back down later in the evening. I get cultured again tomorrow so we'll see if there is some sort of infection going on. The good news is that my white blood cells and neutraphils are at pretty decent levels so maybe they can do some fighting.
I saw the Nurse Practitioner today. Overall I seem to be doing very good. Just need to get my stomach feeling a little better and my blood counts moving in the right direction again. I had another blood transfusion on Sunday (I get about one a week now) and my platelets have been falling. But everyone seems to take it in stride as part of the normal process. Must....be.....patient......
We had a really great weekend as a family. It was Katie's 13th birthday so we rented a hotel room with some space to spread out and enjoyed Friday evening together and had some ice cream cake. On Saturday, Brant took the kids up to Blacksburg for a visit and they both spent the night with friends. Sunday they came thru and spent some time again with me. While Brant was out of town a really awesome group of friends transformed our yard with fresh mulch, trimmed shrubs, cheerful flowers, and two pumpkins for the front porch. It was such a blessing for us and the house looks so nice for the Fall. Thanks again to the Cox Yard Party crew!!!
I am glad it is October...another month has started so surely I am a little closer to going home. I have a lot of tears sometimes but I think it is good to let them out. This by far has been the most challenging thing I have dealt with in my life. And it isn't nearly what some others around me are dealing with. I repeat often....It is in your hands Lord. Each morning brings new hope and each evening brings rest (which I am very thankful for!) and another day closer to home.
The last week has been somewhat eventful. I had my central line removed last Friday morning. I did not pass out despite only receiving local numbing with painful lidocaine shots. The whole process sort of freaked me out, but I have had it done before. So that hole in my chest is healing up and I now just have one access point for IVs - a port that is under my skin so much lower chance of infection. They also started me on antibiotics last Friday because a culture came back positive, but the re-cultures done the next day did not grow anything so they stopped my antibiotics on Sunday. I guess it was another false positive. I have been dealing with some afternoon chills and my temperature goes up but then back down later in the evening. I get cultured again tomorrow so we'll see if there is some sort of infection going on. The good news is that my white blood cells and neutraphils are at pretty decent levels so maybe they can do some fighting.
I saw the Nurse Practitioner today. Overall I seem to be doing very good. Just need to get my stomach feeling a little better and my blood counts moving in the right direction again. I had another blood transfusion on Sunday (I get about one a week now) and my platelets have been falling. But everyone seems to take it in stride as part of the normal process. Must....be.....patient......
We had a really great weekend as a family. It was Katie's 13th birthday so we rented a hotel room with some space to spread out and enjoyed Friday evening together and had some ice cream cake. On Saturday, Brant took the kids up to Blacksburg for a visit and they both spent the night with friends. Sunday they came thru and spent some time again with me. While Brant was out of town a really awesome group of friends transformed our yard with fresh mulch, trimmed shrubs, cheerful flowers, and two pumpkins for the front porch. It was such a blessing for us and the house looks so nice for the Fall. Thanks again to the Cox Yard Party crew!!!
I am glad it is October...another month has started so surely I am a little closer to going home. I have a lot of tears sometimes but I think it is good to let them out. This by far has been the most challenging thing I have dealt with in my life. And it isn't nearly what some others around me are dealing with. I repeat often....It is in your hands Lord. Each morning brings new hope and each evening brings rest (which I am very thankful for!) and another day closer to home.
Thursday, September 26, 2013
Hello Autumn
It is hard to believe we are entering our third season here in Richmond. When we first arrived here, it was still Spring. The days move by and although I miss home terribly, I am thankful to be alive and to be doing so well. The nausea has been a little less in the last week and I am picking up some energy. We try to walk back and forth to clinic and on my off days we wander around a block or two. I have also been trying to do yoga. I wish I had done yoga before I got sick so I would know what I am doing!! I found a pretty basic routine for the morning. You gotta love the Internet! I haven't read any new books, I should probably do that. I did pick up a travel book from the swap bin the other day on Hawaii and have enjoyed learning about the islands and some of the history. It is definitely on the list of places to go.
There are still some bumps in the road. I just got a call that my cultures from yesterday came back gram positive and I need to have cultures re-done tomorrow. Hopefully it is just contamination again and not an infection. I was supposed to get my central line removed tomorrow but they may delay that based on waiting to see if I need antibiotics.
I met with the Dr. this week and we discussed the low red blood cell issue. Based on the tests they ran before it doesn't look like my immune system is "chewing" them up. So he suspects it is just a slow engraftment for the stuff that makes red blood cells in my marrow. It can happen where one of the three cell lines (white, red, & platelets) lags behind the others. There could also be some suppression of the RBC making process by issues with my kidneys. So...more blood for more tests and my Day 60 biopsy is on Monday which will tell the Doctors a lot. He didn't really get into what happens if it is this or that....of course I want to know every detail and that is not always healthy or helpful. Mom reminds me to leave it in God's hands and focus on the positive of each day. Truly, a positive outlook is as important as the medications they give me!
It is almost the weekend which means seeing the family. That is always my highlight of the week. Last weekend the kids were so upbeat and talkative with stories, it was really a great visit. This weekend we will celebrate Katie's 13th birthday so that will be fun. I wish we could all move into an apartment up here together and homeschool for a semester. Brant's commute wouldn't be that bad....lol.....
Thank you all so much for the nice comments last time on my "Hump Day" post and for blowing up Facebook with comments when I posted it there. Your support really helps keep my spirits up, which can be a real challenge on some days!
There are still some bumps in the road. I just got a call that my cultures from yesterday came back gram positive and I need to have cultures re-done tomorrow. Hopefully it is just contamination again and not an infection. I was supposed to get my central line removed tomorrow but they may delay that based on waiting to see if I need antibiotics.
I met with the Dr. this week and we discussed the low red blood cell issue. Based on the tests they ran before it doesn't look like my immune system is "chewing" them up. So he suspects it is just a slow engraftment for the stuff that makes red blood cells in my marrow. It can happen where one of the three cell lines (white, red, & platelets) lags behind the others. There could also be some suppression of the RBC making process by issues with my kidneys. So...more blood for more tests and my Day 60 biopsy is on Monday which will tell the Doctors a lot. He didn't really get into what happens if it is this or that....of course I want to know every detail and that is not always healthy or helpful. Mom reminds me to leave it in God's hands and focus on the positive of each day. Truly, a positive outlook is as important as the medications they give me!
It is almost the weekend which means seeing the family. That is always my highlight of the week. Last weekend the kids were so upbeat and talkative with stories, it was really a great visit. This weekend we will celebrate Katie's 13th birthday so that will be fun. I wish we could all move into an apartment up here together and homeschool for a semester. Brant's commute wouldn't be that bad....lol.....
Thank you all so much for the nice comments last time on my "Hump Day" post and for blowing up Facebook with comments when I posted it there. Your support really helps keep my spirits up, which can be a real challenge on some days!
Thursday, September 19, 2013
Day 50!! Hump Day!
Today I am halfway to Day 100. That is a major milestone for transplant patients. FYI - the other milestones are Days 30, 60, and 180. You may have seen it on Facebook, but my very clever donor brother created this video for me. It was a great way to start my day! Thanks George and everyone else who helped by sending him video clips!! You can check it out below.
https://www.youtube.com/watch?v=5Cd9vdV7CMM&feature=player_embedded
Not too much to report. Still doing pretty good. No infections or viruses. My nausea has been slightly better the last two days. I have had a little cough that they think may be from some post nasal drip - could be allergies from George, blame it on the donor, lol.
My other issue is that my red blood cells and hemoglobin will not stay up and I need blood transfusions about once a week or so. I have O+ blood and George has B+ blood. So they think there may be enough of my old immune system hanging around and it is killing off the B+ cells that my new "George marrow" is producing. They are doing some special testing and I should find out more next week. Eventually I should have B+ blood once they let George's system really take over (after immunosuppression). For now, though, they are still giving me O+ blood with my transfusions. Incidentally, I will also appear to be a male if they genetically test me by my blood. A cheek swab, however, would show me to be female. The doctor here said that this quirk of marrow transplants was used in a House episode and one of the CSI shows,too.
I have my next biopsy and re-staging (Day 60) on September 30th. Although it can be nerve-wracking, it will be good to get an update as to how things are going. Thanks for all the continued prayers and support. We are getting there....a day at a time....
https://www.youtube.com/watch?v=5Cd9vdV7CMM&feature=player_embedded
Not too much to report. Still doing pretty good. No infections or viruses. My nausea has been slightly better the last two days. I have had a little cough that they think may be from some post nasal drip - could be allergies from George, blame it on the donor, lol.
My other issue is that my red blood cells and hemoglobin will not stay up and I need blood transfusions about once a week or so. I have O+ blood and George has B+ blood. So they think there may be enough of my old immune system hanging around and it is killing off the B+ cells that my new "George marrow" is producing. They are doing some special testing and I should find out more next week. Eventually I should have B+ blood once they let George's system really take over (after immunosuppression). For now, though, they are still giving me O+ blood with my transfusions. Incidentally, I will also appear to be a male if they genetically test me by my blood. A cheek swab, however, would show me to be female. The doctor here said that this quirk of marrow transplants was used in a House episode and one of the CSI shows,too.
I have my next biopsy and re-staging (Day 60) on September 30th. Although it can be nerve-wracking, it will be good to get an update as to how things are going. Thanks for all the continued prayers and support. We are getting there....a day at a time....
Wednesday, September 11, 2013
Day 42.....This is tedious.....
Has it almost been a week since I posted last?? Guess there just isn't that much exciting to report. I continue to do well with an occasional day of bad nausea...I guess it shows up just so I don't forget what it feels like. It is frustrating, though, because you think you are past certain symptoms and then they reappear. It is definitely not a linear path to recovery! But so far, I have been tracking along pretty steadily.
One of last Thursday's cultures showed up as positive, so on Saturday I got completely cultured checking for infections. That included two bottles at each of four different sites....in addition to some other blood draws. They did my blood count test after all that and surprise, surprise - I needed a transfusion of blood!! It was a nerve-wracking 48 hrs - I must have checked my temperature hourly, but nothing else grew so no infection. They figure the original positive was probably just contamination in the bottle.
Yesterday I had a consult with the ophthalmologist to check for any signs of GVHD. He said my eyes looked good. Today I had a doctor visit and he was pleased with my progress but says it is still early and we need to stay on top of everything. He confirmed that my 30-day biopsy was all good with complete engraftment for marrow, peripheral blood, T-cells, and lymphocytes. Go George... My WBC count is up to 5.6. I haven't seen numbers like that in years. The doctor reminded me that I have healthy bone marrow now. No signs of leukemia but they will be watching closely for that and if it appears they will lower my immunosuppressants and let George's T-cell have at it. "Release the hounds" comes to mind.... I will have another biopsy at Day 60 which is right around the corner. But the best news I got is that he put me on every other day clinic visits...woo hoo!
On the home front (er...hotel front), Mom has been back home this week to be with Dad for a heart procedure. He had it today and it went well and should be home from the hospital tomorrow. My sister came up to take over as Caregiver and we have had a nice week. I also enjoyed visits with Brant & Katie last Saturday, and Chris came up on Sunday. We found a new park with great views over the James River. I went back again yesterday when a friend from Chesapeake came up to visit. It is so nice to get outside as long as I stay out of the sun.
I hope everyone had a chance to remember in some way 9/11 today. It is hard to believe it has been 12 years. I was able to catch the Moment of Silence at the White House and some of the Ground Zero roll call on TV. My thoughts and prayers are with the many families who must still feel such pain and loss.
One of last Thursday's cultures showed up as positive, so on Saturday I got completely cultured checking for infections. That included two bottles at each of four different sites....in addition to some other blood draws. They did my blood count test after all that and surprise, surprise - I needed a transfusion of blood!! It was a nerve-wracking 48 hrs - I must have checked my temperature hourly, but nothing else grew so no infection. They figure the original positive was probably just contamination in the bottle.
Yesterday I had a consult with the ophthalmologist to check for any signs of GVHD. He said my eyes looked good. Today I had a doctor visit and he was pleased with my progress but says it is still early and we need to stay on top of everything. He confirmed that my 30-day biopsy was all good with complete engraftment for marrow, peripheral blood, T-cells, and lymphocytes. Go George... My WBC count is up to 5.6. I haven't seen numbers like that in years. The doctor reminded me that I have healthy bone marrow now. No signs of leukemia but they will be watching closely for that and if it appears they will lower my immunosuppressants and let George's T-cell have at it. "Release the hounds" comes to mind.... I will have another biopsy at Day 60 which is right around the corner. But the best news I got is that he put me on every other day clinic visits...woo hoo!
On the home front (er...hotel front), Mom has been back home this week to be with Dad for a heart procedure. He had it today and it went well and should be home from the hospital tomorrow. My sister came up to take over as Caregiver and we have had a nice week. I also enjoyed visits with Brant & Katie last Saturday, and Chris came up on Sunday. We found a new park with great views over the James River. I went back again yesterday when a friend from Chesapeake came up to visit. It is so nice to get outside as long as I stay out of the sun.
I hope everyone had a chance to remember in some way 9/11 today. It is hard to believe it has been 12 years. I was able to catch the Moment of Silence at the White House and some of the Ground Zero roll call on TV. My thoughts and prayers are with the many families who must still feel such pain and loss.
Thursday, September 5, 2013
Hip Hip Hooray for Good News!!
I am feeling very blessed that I was able to get my biopsy results from the Nurse Practitioner today and that the results were all good!! She informed me that there was no evidence of leukemia in my peripheral blood or in the marrow. She read off a whole bunch of "Negative" responses on my cytogenetic results which apparently is good. And.....my bone marrow shows to be 100% Donor genetic material. Woot Woot!! Way to go George's stem cells! I will probably have this explained to me in more detail at my doctor's appointment next week. But for now - Thank you Lord for so many answered prayers!!
The rest of the check up went pretty well. She sees some evidence of GVHD on my skin but it is not bad and requires no treatment at this time. We discussed strategies to keep my nutrition levels up when I have no appetite and how to keep the pills from causing too much nausea. My only real problem is my kidney function is being impacted by the cyclosporine immunosuppressant drug. They watch my creatinine levels to see how my kidneys are doing and it keeps creeping up. All I can do is drink more, but that is a challenge trying not to feel bloated/nauseous. She said the best thing is a steady but small flow of liquid throughout the day versus drinking large amounts at one time. Maybe I should get one of those hydration packs that the bicyclists and runners use and just walk around with it on all day...lol.
Mom and I have been checking out a few extended stay places and are contemplating a move from the Hospitality House maybe later this month. It will be hard to give up the convenience and community we have here, but it would be nice to have a little more space. I have enjoyed these little outings and am getting a feel for Richmond beyond MCV. We look for little parks (with shade) where we can walk.
I also just finished a book - shock!! I am not a great reader, but as an absentee member of a Book Club back home I try to keep up with what they are reading. The book was The Alchemist and I really enjoyed it (and not just because it was short!!). I found that some of the stuff related to being "in the present" and learning from "wherever it is you are at" really spoke to me. I have been so focused on being homesick and just wanting to get back to Chesapeake that I have maybe been missing some blessings that this time living apart from my family in Richmond can bring. Not sure I have found too many blessings or learned too many lessons yet....I would rather be healthy and with my family...but at least I am looking for them now.
Final funny - did you all know that the group Hanson still tours??? Yesterday they were at the theatre that is a block from the HH. There were actually girls...uhmmm...mostly grown women...camping out to be first in the theatre. Hope it was a rockin' concert!
The rest of the check up went pretty well. She sees some evidence of GVHD on my skin but it is not bad and requires no treatment at this time. We discussed strategies to keep my nutrition levels up when I have no appetite and how to keep the pills from causing too much nausea. My only real problem is my kidney function is being impacted by the cyclosporine immunosuppressant drug. They watch my creatinine levels to see how my kidneys are doing and it keeps creeping up. All I can do is drink more, but that is a challenge trying not to feel bloated/nauseous. She said the best thing is a steady but small flow of liquid throughout the day versus drinking large amounts at one time. Maybe I should get one of those hydration packs that the bicyclists and runners use and just walk around with it on all day...lol.
Mom and I have been checking out a few extended stay places and are contemplating a move from the Hospitality House maybe later this month. It will be hard to give up the convenience and community we have here, but it would be nice to have a little more space. I have enjoyed these little outings and am getting a feel for Richmond beyond MCV. We look for little parks (with shade) where we can walk.
I also just finished a book - shock!! I am not a great reader, but as an absentee member of a Book Club back home I try to keep up with what they are reading. The book was The Alchemist and I really enjoyed it (and not just because it was short!!). I found that some of the stuff related to being "in the present" and learning from "wherever it is you are at" really spoke to me. I have been so focused on being homesick and just wanting to get back to Chesapeake that I have maybe been missing some blessings that this time living apart from my family in Richmond can bring. Not sure I have found too many blessings or learned too many lessons yet....I would rather be healthy and with my family...but at least I am looking for them now.
Final funny - did you all know that the group Hanson still tours??? Yesterday they were at the theatre that is a block from the HH. There were actually girls...uhmmm...mostly grown women...camping out to be first in the theatre. Hope it was a rockin' concert!
Tuesday, September 3, 2013
No Results Yet
Just a quick update to say I haven't gotten any biopsy results yet. Partly because I haven't seen a Dr. or Practitioner yet this week, and partly because it takes a while to get the pathology results completed. The nurses in clinic can't even tell in the system if my results are back. I have been given the day off tomorrow - yeah!! Second "off" day since I was discharged. I will see a Nurse Practitioner on Thursday so maybe I will have some preliminary results at that visit. The two main things they will be looking for are 1) No evidence of Leukemia and 2) My bone marrow chimerism - which will show how much is made up of my brother's cells and how much is my cells that survived chemo. We are praying for 100% donor. Extra credit if you know why they use the word chimerism....
Everything else is going pretty well. My counts are still trending slowly upward and my appetite is improving. No fevers or infections..... I will post again once I have some updates from the biopsy.
Congrats to Brant and the kids for surviving the first day of school....it was a busy one. We had a little help from Ruth and friends, too! Thanks!
Everything else is going pretty well. My counts are still trending slowly upward and my appetite is improving. No fevers or infections..... I will post again once I have some updates from the biopsy.
Congrats to Brant and the kids for surviving the first day of school....it was a busy one. We had a little help from Ruth and friends, too! Thanks!
Saturday, August 31, 2013
Past Day 30....
Well Day 30 came and went yesterday without much fanfare, but it is a significant milestone. I am thankful that there have been no fevers, infections, etc thus far. I realize things can always change tomorrow, but it is nice to have made it to this point with only the annoyance of nausea, loss of appetite, and fatigue. My white blood cells have been trending up the last few days - I hit 2.7 yesterday and was 2.4 today. They will fluctuate and that is normal.
I had my Day 30 biopsy on Thursday. It went fairly well. They are testing out a new drill to replace the hand auger method. I allowed them to use it on me since it didn't seem like it could be much different. But I was a little startled when it sounded like he was working on a deck. Guess I wasn't thinking that a drill would come with drill sounds!! Duh. I think it is probably just a Black&Decker that they made in white and jacked the price up a kazillion dollars. The biopsy results probably won't be available until Tuesday because of the holiday weekend. I will post as soon as I know something
Funny mom story - On Thursday we headed into the infusion room which has about 10 recliners for patients getting treatment and a little chair next to each for a caregiver/visitor. Mom barely had time to set her stuff down before she started making rounds to say good morning to everyone, check on those she knew, meet those she didn't, etc. I mumbled something about mom thinking she was the official greeter in the room. Next to me was a guy sound asleep under his blanket. As mom came back to my chair, the nurse asked her with a completely straight face - "I can wake him up if you need to talk with him" We all laughed so hard. The nurses are so funny and upbeat. It is good to get a laugh in like that at least once each day.
I had a visit today from a friend in Blacksburg, and it was so nice to chat. It is great that Richmond is along the route between the beaches and the Burg! It has allowed me to see a few friends. I also have to send a big THANK-YOU to my co-workers in Salem that sent a check because they wanted to help pay for George's plane ticket. You guys are awesome and have really been a great support. Thank you so much!!
Brant is busy getting ready for the first day of school with the kids. They will be up tomorrow to visit - YEAH!! I think he has the hardest job of all, especially with starting a new job at the same time as being a single dad. You are truly awesome Brant and I love you!! Good luck the next few weeks! Thanks so much to our friends who have dropped off meals, included our kids in stuff, and given them rides when Brant couldn't be in three places at once. My sister, especially, has been toting them all over the greater Hampton Roads area!! Thanks everyone. We could not travel this road alone.
I had my Day 30 biopsy on Thursday. It went fairly well. They are testing out a new drill to replace the hand auger method. I allowed them to use it on me since it didn't seem like it could be much different. But I was a little startled when it sounded like he was working on a deck. Guess I wasn't thinking that a drill would come with drill sounds!! Duh. I think it is probably just a Black&Decker that they made in white and jacked the price up a kazillion dollars. The biopsy results probably won't be available until Tuesday because of the holiday weekend. I will post as soon as I know something
Funny mom story - On Thursday we headed into the infusion room which has about 10 recliners for patients getting treatment and a little chair next to each for a caregiver/visitor. Mom barely had time to set her stuff down before she started making rounds to say good morning to everyone, check on those she knew, meet those she didn't, etc. I mumbled something about mom thinking she was the official greeter in the room. Next to me was a guy sound asleep under his blanket. As mom came back to my chair, the nurse asked her with a completely straight face - "I can wake him up if you need to talk with him" We all laughed so hard. The nurses are so funny and upbeat. It is good to get a laugh in like that at least once each day.
I had a visit today from a friend in Blacksburg, and it was so nice to chat. It is great that Richmond is along the route between the beaches and the Burg! It has allowed me to see a few friends. I also have to send a big THANK-YOU to my co-workers in Salem that sent a check because they wanted to help pay for George's plane ticket. You guys are awesome and have really been a great support. Thank you so much!!
Brant is busy getting ready for the first day of school with the kids. They will be up tomorrow to visit - YEAH!! I think he has the hardest job of all, especially with starting a new job at the same time as being a single dad. You are truly awesome Brant and I love you!! Good luck the next few weeks! Thanks so much to our friends who have dropped off meals, included our kids in stuff, and given them rides when Brant couldn't be in three places at once. My sister, especially, has been toting them all over the greater Hampton Roads area!! Thanks everyone. We could not travel this road alone.
Tuesday, August 27, 2013
Day +27
There is not a lot new to report from our little homestead here in Richmond. Unfortunately my white blood cell count drifted down to around 2.0 and has fallen further to 1.7. My platelets are hanging in there at 115 and my Hemoglobin floats around the 8.5 mark. But it was 8.1 this morning so I am guessing I will have a transfusion tomorrow if it drifts any lower because they like to keep you above 8.0. My white blood cell count when I left the hospital was a bit higher but that was because I had been given a growth factor that artificially bumps up WBC production. I have been feeling worried about my lagging blood counts, but I saw Dr. Chung today and he is happy with where I am at and can see that there are a lot of precursor cells in the pipeline. I have a bone marrow biopsy on Thursday and that will allow the doctors to see even better what is going on. I also had a follow-up with the cardiologist today and he thinks I am doing well.
We head to clinic every morning. I have not had a day off since I left the hospital, so it is nice we are close. We walk most days now to get a little exercise. My electrolyte levels seems to be improving, but they are working to get my cyclosporine levels correct. Apparently this will be an ongoing process. Cyclosporine is the immunosuppressant drug that keeps the donor marrow "under control" for a while as it gets settled into my system. Too much of the drug is hard on my kidneys and keeps the donor from "setting up shop". Too little of the drug and the donor system can go crazy and start attacking me - GVHD. I think we are getting close to having it at a good level so maybe I will get a day off soon.
They do keep a really close eye on you here. I get daily labs as well as weekly chest x-rays and blood cultures to watch for anything that might be brewing. The nurses are on top of any symptoms you tell them about. You see a Dr. or Nurse Practitioner at least weekly. And the pharmacist meets with you frequently as well. By all accounts I am doing well at this point. My stomach is still not a friend to me, but I eat because I know that is necessary for recovery. Mom does a great job of trying to find things I will like and that are good for me.....and that meet the ridiculously strict dietary restrictions they give you post-transplant.
The kids and Brant try to make it up most weekends which is great. Last Sunday Katie was dropped off by some of our Blacksburg friends heading home and I had almost the whole day with her. That was a lot of fun. I am looking forward to this weekend and a nice visit from Brant and the kids. I am bummed that I will be missing the first day of school, but Brant has promised to take pictures for me.
Hope everyone is enjoying their end of summer - or is looking forward to spring for my Australian family!!
We head to clinic every morning. I have not had a day off since I left the hospital, so it is nice we are close. We walk most days now to get a little exercise. My electrolyte levels seems to be improving, but they are working to get my cyclosporine levels correct. Apparently this will be an ongoing process. Cyclosporine is the immunosuppressant drug that keeps the donor marrow "under control" for a while as it gets settled into my system. Too much of the drug is hard on my kidneys and keeps the donor from "setting up shop". Too little of the drug and the donor system can go crazy and start attacking me - GVHD. I think we are getting close to having it at a good level so maybe I will get a day off soon.
They do keep a really close eye on you here. I get daily labs as well as weekly chest x-rays and blood cultures to watch for anything that might be brewing. The nurses are on top of any symptoms you tell them about. You see a Dr. or Nurse Practitioner at least weekly. And the pharmacist meets with you frequently as well. By all accounts I am doing well at this point. My stomach is still not a friend to me, but I eat because I know that is necessary for recovery. Mom does a great job of trying to find things I will like and that are good for me.....and that meet the ridiculously strict dietary restrictions they give you post-transplant.
The kids and Brant try to make it up most weekends which is great. Last Sunday Katie was dropped off by some of our Blacksburg friends heading home and I had almost the whole day with her. That was a lot of fun. I am looking forward to this weekend and a nice visit from Brant and the kids. I am bummed that I will be missing the first day of school, but Brant has promised to take pictures for me.
Hope everyone is enjoying their end of summer - or is looking forward to spring for my Australian family!!
Thursday, August 22, 2013
Sista Support!
I would have updated this earlier in the evening, but first I had to refill my pill container for the week and that took some time!!! I have one of those really big ones - 7days x four times a day. I don't really want to count the pills, but it is between 20 and 25 each day....fun! If I am working on an honorary PhD in oncology, I have to also be headed for a minor in pharmacy.
Mom went home Wednesday night for a little R&R (actually she probably worked harder down there catching up on stuff and doing the Food Pantry at church). So my sister was up here to be the "caregiver". It has been fun and she has done a good job. Today when I got out of clinic, we packed up our lunch and had a little picnic in the shade on the Capitol grounds. It was very nice weather and a good change of scenery!
Medically I am doing ok. I don't feel awesome, but I keep my food and pills down, and seem to have pretty good strength. It is nerve-wracking wondering if I am developing GVHD symptoms of if maybe I have picked up a bug or something. Going to clinic each day is a bit tedious. But the nurses are friendly and we have a regular crew in there getting our various fluids. I am still a potassium, magnesium, saline fluid kind of client. Although yesterday my Hemoglobin had dropped and I got a unit of blood. This morning I had my weekly chest xray, so that was something different.
Today marks 4 months since we first found out it was Leukemia. I was at work that morning and had a call around 3pm and left to meet Brant. Since the kids were already home from school, we talked in the Panera Bread parking lot and drove around Blacksburg....funny what you remember. Since then I have had 59 nights in the hospital, 40 nights at home, and 24 nights in the Hospitality House. It has gone by so slowly, but it amazes me that we are already at the 4 month mark. Just gotta keep plugging along and saying those prayers that slowly but surely I will be healthy again and back with my family.
Mom went home Wednesday night for a little R&R (actually she probably worked harder down there catching up on stuff and doing the Food Pantry at church). So my sister was up here to be the "caregiver". It has been fun and she has done a good job. Today when I got out of clinic, we packed up our lunch and had a little picnic in the shade on the Capitol grounds. It was very nice weather and a good change of scenery!Medically I am doing ok. I don't feel awesome, but I keep my food and pills down, and seem to have pretty good strength. It is nerve-wracking wondering if I am developing GVHD symptoms of if maybe I have picked up a bug or something. Going to clinic each day is a bit tedious. But the nurses are friendly and we have a regular crew in there getting our various fluids. I am still a potassium, magnesium, saline fluid kind of client. Although yesterday my Hemoglobin had dropped and I got a unit of blood. This morning I had my weekly chest xray, so that was something different.
Today marks 4 months since we first found out it was Leukemia. I was at work that morning and had a call around 3pm and left to meet Brant. Since the kids were already home from school, we talked in the Panera Bread parking lot and drove around Blacksburg....funny what you remember. Since then I have had 59 nights in the hospital, 40 nights at home, and 24 nights in the Hospitality House. It has gone by so slowly, but it amazes me that we are already at the 4 month mark. Just gotta keep plugging along and saying those prayers that slowly but surely I will be healthy again and back with my family.
Sunday, August 18, 2013
Day +18
You can tell when I don't have much clever to write about because my title is just my "Day" post transplant. It is funny in clinic, though, because it is the first question most people ask..."So, what day are you?" One guy pins a little piece of construction paper on the front of his hat announcing his day. Guess he got tired of being asked, or maybe he is just really happy for each day....as we all are.
We are settling in pretty well post-hospital. We report to the clinic at 9 am each morning where they draw labs to check my blood counts and electrolytes. Then I go over to the transfusion room where they give me repletions for anything that is low. You pretty much see the same folks every day who are recent transplanters plus a few others that mix in and out but aren't on the daily routine. My blood count levels have been good, but I get magnesium, potassium, and a bag of fluid each day. We are usually out of there by 1pm. They have really nice recliners and heated blankets to try to make your stay as pleasant as possible. And of course very nice nurses, too!
Back at the Hospitality House, mom is working to keep me drinking and eating enough. My stomach/appetite still hasn't returned to normal and nothing tastes any good. Based on conversations with other transplant patients, it may be a while. But it is still good to have access to a wider variety of foods. Today my sister Ruth came up to visit and fixed a delicious (I think) roasted chicken. It was like having Sunday dinner together. Yesterday Brant and Chris visited. We had fun playing pool down in the lobby area and ordered pizza for them. I had a pre-packaged frozen meal...yum yum! Katie is finally back home today from her big trip and I can't wait to see her when the kids visit next.
I have been pretty homesick but appreciate all of the comments, mail, email, texts, facebook, etc support that I receive to encourage me to be strong and keep fighting. I really have to focus on the Step by Step, Day by Day attitude and have faith that God will see us through...even if it does feel like forever!!!
We are settling in pretty well post-hospital. We report to the clinic at 9 am each morning where they draw labs to check my blood counts and electrolytes. Then I go over to the transfusion room where they give me repletions for anything that is low. You pretty much see the same folks every day who are recent transplanters plus a few others that mix in and out but aren't on the daily routine. My blood count levels have been good, but I get magnesium, potassium, and a bag of fluid each day. We are usually out of there by 1pm. They have really nice recliners and heated blankets to try to make your stay as pleasant as possible. And of course very nice nurses, too!
Back at the Hospitality House, mom is working to keep me drinking and eating enough. My stomach/appetite still hasn't returned to normal and nothing tastes any good. Based on conversations with other transplant patients, it may be a while. But it is still good to have access to a wider variety of foods. Today my sister Ruth came up to visit and fixed a delicious (I think) roasted chicken. It was like having Sunday dinner together. Yesterday Brant and Chris visited. We had fun playing pool down in the lobby area and ordered pizza for them. I had a pre-packaged frozen meal...yum yum! Katie is finally back home today from her big trip and I can't wait to see her when the kids visit next.
I have been pretty homesick but appreciate all of the comments, mail, email, texts, facebook, etc support that I receive to encourage me to be strong and keep fighting. I really have to focus on the Step by Step, Day by Day attitude and have faith that God will see us through...even if it does feel like forever!!!
Thursday, August 15, 2013
Discharged!!
As predicted, the doctors released me yesterday on Day +14. Of course, I didn't go very far, just about 8 blocks down the street to the Hospitality House. It worked out great that my dad was up to attend the Caregiver Class with my mom that morning, and he was able to get me moved over and settled that afternoon. Mom said the Caregiver Class will scare you about everything you have to do to avoid infections/complications. But it was good information.
We are settled into our new room. It isn't much bigger than the hospital room, but at least I can get out and about. A mask must always be on when I am outside my room or the clinic, so I feel somewhat like a candy store robber when I wear my pink hat and hoodie combo along with the mask. We may look for a little larger place to hang out in Richmond as time goes on, but since I have to be at clinic everyday right now, this place seems the most convenient.
The first 100 days for a transplant patient are most critical. I am very nervous about what can happen, especially graft vs host disease (GVHD). I already have a little of it with a rash on my palms and soles of my feet. This is apparently pretty typical and they just want me to put steroid cream on the area. I try to remind myself that they want to see some GVHD and it doesn't mean I will progress into the scarier stuff.
My stomach is a little better today but my mouth and tastebuds are still gone. I did enjoy some fresh cucumbers and tomatoes tonight. They were super well scrubbed by mom. I am not even allowed to handle fresh fruit or vegetables until they have been washed. Like I said, the restrictions to avoid infection are a bit extreme.....
I leave you with the Top 5 for being out of the hospital:
5. No vital signs at midnight and 4am
4. Showers without Gertrude the IV pole
3. Walking without Gertrude the IV pole
2. Don't have to measure input and output (you will know what this is if you have had to do it!!!)
1. No More Hospital Food
We are settled into our new room. It isn't much bigger than the hospital room, but at least I can get out and about. A mask must always be on when I am outside my room or the clinic, so I feel somewhat like a candy store robber when I wear my pink hat and hoodie combo along with the mask. We may look for a little larger place to hang out in Richmond as time goes on, but since I have to be at clinic everyday right now, this place seems the most convenient.
The first 100 days for a transplant patient are most critical. I am very nervous about what can happen, especially graft vs host disease (GVHD). I already have a little of it with a rash on my palms and soles of my feet. This is apparently pretty typical and they just want me to put steroid cream on the area. I try to remind myself that they want to see some GVHD and it doesn't mean I will progress into the scarier stuff.
My stomach is a little better today but my mouth and tastebuds are still gone. I did enjoy some fresh cucumbers and tomatoes tonight. They were super well scrubbed by mom. I am not even allowed to handle fresh fruit or vegetables until they have been washed. Like I said, the restrictions to avoid infection are a bit extreme.....
I leave you with the Top 5 for being out of the hospital:
5. No vital signs at midnight and 4am
4. Showers without Gertrude the IV pole
3. Walking without Gertrude the IV pole
2. Don't have to measure input and output (you will know what this is if you have had to do it!!!)
1. No More Hospital Food
Tuesday, August 13, 2013
Day +13
Yesterday and today have been a little challenging as I have not felt very good. It is hard to say exactly what is wrong, I guess just a general blechy feeling as if I had chemo. Oh yeah, I did, but I thought I was past those feelings. Today was a little better and maybe tomorrow will be an improvement as well. My appetite is gone and I have a very metallic taste in my mouth. Extra napping has been on the daily agenda.
But medically I continue to improve. My WBC count is 4.8 this evening which is very good. My platelets are above 100 and hemoglobin is 8.7. So I am no longer receiving transfusions. What a relief to get those steroids out of my system!! Today they took me off almost all of my IV meds and gave them in pill form. Several of my antibiotics were also stopped. They are saying I may get discharged tomorrow if I do well thru the night and don't spike any fevers. That is crazy that I could be out of here on Day 14!! . Everyone comments on how well I am doing....just wish I kinda felt that way. When I get discharged I will be right down the street and be spending most of my days in the clinic. But I am thinking a little fresh air, sunshine, and non-hospital food will help how I am feeling.
I have enjoyed following Brant and Katie up at Cooperstown this week while she is playing baseball with her team at the Cooperstown Dreams Park. Two of her six games are televised via the internet and she hit one over the fence while I was watching!! It was really special. I wish we could all be there together, but I'm glad they were still able to make the trip. Chris has been hanging out back home with my sister and she brought him up for a visit which was wonderful! I have been pretty homesick lately and really enjoy every chance I get to see Brant and the kids.
But medically I continue to improve. My WBC count is 4.8 this evening which is very good. My platelets are above 100 and hemoglobin is 8.7. So I am no longer receiving transfusions. What a relief to get those steroids out of my system!! Today they took me off almost all of my IV meds and gave them in pill form. Several of my antibiotics were also stopped. They are saying I may get discharged tomorrow if I do well thru the night and don't spike any fevers. That is crazy that I could be out of here on Day 14!! . Everyone comments on how well I am doing....just wish I kinda felt that way. When I get discharged I will be right down the street and be spending most of my days in the clinic. But I am thinking a little fresh air, sunshine, and non-hospital food will help how I am feeling.
I have enjoyed following Brant and Katie up at Cooperstown this week while she is playing baseball with her team at the Cooperstown Dreams Park. Two of her six games are televised via the internet and she hit one over the fence while I was watching!! It was really special. I wish we could all be there together, but I'm glad they were still able to make the trip. Chris has been hanging out back home with my sister and she brought him up for a visit which was wonderful! I have been pretty homesick lately and really enjoy every chance I get to see Brant and the kids.
Sunday, August 11, 2013
Some Pain....Much Gain
Yesterday and today I had severe pain in my lower back. I have had bone and joint pain before but this was something else. We worked thru several pain meds without much luck but I did get some relief during the night and again this afternoon - both times after receiving platelets. They think maybe the Benadryl helped. The good news is that everyone thinks the pain is from the engraftment process of George's stem cells kicking into gear. And it appears they are right because in just 1-1/2 days my white blood cells jumped from 0.2 to 1.3 to 3.4 this evening! And my platelets went from 10 to 20 to 101!! Woo hoo! They are starting to use the "D" word - discharge. Maybe later this week. But I will continue to be patient. George has given me the charge to commit to a "Year of Boring" in order to not waste this opportunity by taking any unnecessary risks. So that has become my mindset and I will not push to get out of this joint any sooner than the docs are ready.
Thursday, August 8, 2013
Day 8 - Doing Well
I wouldn't say that the days are flying by, but it is a lot nicer to see Day +8 on my whiteboard instead of Day +1. Plus, I am feeling much better so I can endure the time easier. My blood counts have continued to drop as expected from the chemo treatments I received. I haven't had any white blood cells since Day 1, but now the platelets and red blood cells are pretty much gone, too, so I have blood and platelet transfusions often. Since I have reacted to the platelets with hives, I get a lovely dose of Benadryl and steroids before each transfusion. I do not like the doped up drowsy feeling, but I guess it beats being covered in itchy welts! I hope that my new stem cells are busy at work and we will see a glimmer of new life here in the next few days.
My heart rate has dropped pretty low over the last few days. It could be from all of the Benadryl or maybe one of the other meds. I was just thinking that maybe my inner Olympic athlete was shining thru, but the med team doesn't seem to agree. So they are keeping an eye on that. I have started exercising on my bike again and trying to do some gentle strength and stretching moves. That is really supposed to help with recovery. Of course, I do still get my fair share of naps.
George will be leaving on Saturday. It will be sad to see him go but I know Davina and the kids will be so glad to have him home. A month is a long time to be gone and we all truly appreciate the gifts of time, love, and stem cells that have been given. Most of you may have seen it on Facebook, but I got us a pair of matching hats for our Donor/Survivor status. Thank you George, and safe travels!! I look forward to seeing you one last time tomorrow before you leave.
My heart rate has dropped pretty low over the last few days. It could be from all of the Benadryl or maybe one of the other meds. I was just thinking that maybe my inner Olympic athlete was shining thru, but the med team doesn't seem to agree. So they are keeping an eye on that. I have started exercising on my bike again and trying to do some gentle strength and stretching moves. That is really supposed to help with recovery. Of course, I do still get my fair share of naps.
Monday, August 5, 2013
Gertrude ver4.0
Things are picking up a little for me. I haven't spiked a fever in two nights and my nausea is getting better. I ate enough today to avoid going on IV nutrition. Not sure why the thought of that bothers me, but it just seems unnatural. It must be better to get calories from Oreos, and not a bag of goo.
So today's post is dedicated to my new friend - Gertrude version 4.0. The other day my pole almost tipped over because it only had four "feet". So I asked if it could be upgraded to one with five or more feet. This was also a big deal for mom - Nurse Safety Police - who couldn't stand that I had a "four-footed" IV pole. They wheeled out a new pole. It has six feet - safety issue addressed. But it is also a mammoth of a IV pole. This baby has double uprights and a crossbar, plus it's own little caddy tray. It should have an oversized load permit to roll down the halls, and it seriously takes up half the floor space in the bathroom. On the bright side, I have more room to hang my "bling" and I am considering the possibility of selling advertising space on the uprights. Gatorade should be interested.
Other news - it has been a nice few days with company helping make the time pass. Brant and the kids were here Friday. Dad and my sister Ruth came yesterday. And today my Uncle and Aunt from Florida visited along with my brother. Everyone (including mom!!) headed home to Portsmouth tonight to spend a little time together before George has to leave for Australia. I am so happy mom is ok to leave me for a day or two. The nurses here are really great and I can survive. But it is certainly nice that I don't have to do it very much.
So today's post is dedicated to my new friend - Gertrude version 4.0. The other day my pole almost tipped over because it only had four "feet". So I asked if it could be upgraded to one with five or more feet. This was also a big deal for mom - Nurse Safety Police - who couldn't stand that I had a "four-footed" IV pole. They wheeled out a new pole. It has six feet - safety issue addressed. But it is also a mammoth of a IV pole. This baby has double uprights and a crossbar, plus it's own little caddy tray. It should have an oversized load permit to roll down the halls, and it seriously takes up half the floor space in the bathroom. On the bright side, I have more room to hang my "bling" and I am considering the possibility of selling advertising space on the uprights. Gatorade should be interested.Other news - it has been a nice few days with company helping make the time pass. Brant and the kids were here Friday. Dad and my sister Ruth came yesterday. And today my Uncle and Aunt from Florida visited along with my brother. Everyone (including mom!!) headed home to Portsmouth tonight to spend a little time together before George has to leave for Australia. I am so happy mom is ok to leave me for a day or two. The nurses here are really great and I can survive. But it is certainly nice that I don't have to do it very much.
Saturday, August 3, 2013
Day +3, Creepin'....
I never really liked or understood that Eric Church song "Creepin'" when it was popular, but it now has new meaning for me....lol. Although time is passing slowly, we are making progress. My fevers are not quite as severe. They have put me on some heavy duty antibiotics and they appear to be keeping any infections at bay. The allergy testing I had done before admission has already paid off since they have used two antibiotics that I was flagged as being allergic to. So far no rashes either - yeah! I also got a rather painful 3 month birth control shot today - like that was really critical....ha. Actually, it is just to prevent any bleeding since I will have low blood counts for quite a while.
My energy is coming up a little but my stomach issues and nausea keep me feeling less than spunky. I have been approved to receive IV nutrition if needed, but so far I am keeping down enough Gatorade, pretzels, crackers, and soup to not require it. I am pretty sure I may never eat dry cheerios and drink Gatorade again in my life. The exception for the Gatorade would be if I could drink it while playing in a beach volleyball tournament.
My white blood cell count is pretty much zero. According to the "plan", right now George's stem cells should be setting up shop and making some new blood cells in my bone marrow. This takes a little time and they expect my white cell count to start rising around Day 11-12. Once his cells start showing up in my bloodstream, the next phase is "training" them to behave in my body. Most of that will be done on an outpatient basis.
We had a minor crisis today when the iPad quit working. Mom has become such a pro on that thing. You would not believe how her hunt and peck technique on the touch screen has evolved over the last three months!! So it was with great relief when the thing mysteriously turned back on, and all is well in our hospital room again.
Have a nice weekend everyone - enjoy your families!
My energy is coming up a little but my stomach issues and nausea keep me feeling less than spunky. I have been approved to receive IV nutrition if needed, but so far I am keeping down enough Gatorade, pretzels, crackers, and soup to not require it. I am pretty sure I may never eat dry cheerios and drink Gatorade again in my life. The exception for the Gatorade would be if I could drink it while playing in a beach volleyball tournament.
My white blood cell count is pretty much zero. According to the "plan", right now George's stem cells should be setting up shop and making some new blood cells in my bone marrow. This takes a little time and they expect my white cell count to start rising around Day 11-12. Once his cells start showing up in my bloodstream, the next phase is "training" them to behave in my body. Most of that will be done on an outpatient basis.
We had a minor crisis today when the iPad quit working. Mom has become such a pro on that thing. You would not believe how her hunt and peck technique on the touch screen has evolved over the last three months!! So it was with great relief when the thing mysteriously turned back on, and all is well in our hospital room again.
Have a nice weekend everyone - enjoy your families!
Thursday, August 1, 2013
Day +1....You gotta start somewhere!
Yesterday was Transplant Day, also known as Day 0. I survived it with less fanfare than expected. My yucky days have extended since Sunday so there just wasn't any energy to get on the party heels and celebrate. But that is ok. The stems cells transfused well and should be finding their way into my bone marrow as we speak. Now it is just a waiting game to let everything grow and recover.
I have still been very weak and not eating much. I am spiking a fever which leaves me wiped out. I have had blood cultures and a chest x-ray, but so far they have not found anything to be too much of a concern. The Tylenol works to keep the fever at bay and I have walked the halls a little when I have the energy.
But I am anxious to start feeling a little better. The days go by very slowly when you are feeling sick. The staff here on the Transplant Floor are encouraging, and I appreciate the many thoughts and prayers sent my way. You all are in my prayers as well - I thank God for such an awesome support network!
I have still been very weak and not eating much. I am spiking a fever which leaves me wiped out. I have had blood cultures and a chest x-ray, but so far they have not found anything to be too much of a concern. The Tylenol works to keep the fever at bay and I have walked the halls a little when I have the energy.
But I am anxious to start feeling a little better. The days go by very slowly when you are feeling sick. The staff here on the Transplant Floor are encouraging, and I appreciate the many thoughts and prayers sent my way. You all are in my prayers as well - I thank God for such an awesome support network!
Tuesday, July 30, 2013
Sick of Bunny Foo Foo
Another long day with very little energy. At least I didn't have any chemo today, but my last dose of ATG - rabbit will be running until 3 or 4 am. It has wiped me out pretty good and caused my leg joints to ache like flu symptoms. The good news is that it is done after this one last dose. It has been a mental challenge to stay awake the past few days, but I know it is better to keep moving. Luckily Mom is there to kick me out of bed and drag me around the halls for a few minutes. And you guys probably thought she was just all sweet and stuff..... She reminds me I should start feeling better is a few days.
George has been busy with his DONOR duties. He spent about 5 hours down in the Apheresis Unit today. The estimate for his collection was six million cells - awesome!! That is plenty for a transplant and lots of extras, too. So we are set for Transplant Day tomorrow! It actually should be much like getting a transfusion of blood. We will be happy for it not to be very exciting!
George has been busy with his DONOR duties. He spent about 5 hours down in the Apheresis Unit today. The estimate for his collection was six million cells - awesome!! That is plenty for a transplant and lots of extras, too. So we are set for Transplant Day tomorrow! It actually should be much like getting a transfusion of blood. We will be happy for it not to be very exciting!
Monday, July 29, 2013
Hanging in there
I finished up my fourth and final day of chemo this morning and then had my second dose of ATG and later my first dose of cylcosporin. These last two drugs are immunosuppressants. For the ATG I get Benadryl and steroids around the clock to avoid reactions. My last ATG dose is tomorrow and I am hoping things will feel a little better once I get the chemo and other meds out of my system. I am pretty doped up most of the day and am struggling with spiking fevers and feeling nauseous at night. They just did cultures to make sure an infection isn't growing.
George has completed three rounds of shots. He should have his stem cells collected on the apheresis machine tomorrow. I am still on schedule to receive the cells the next day Wednesday, July 31st. He says it isn't too bad, but his bones are achy from the meds. Of course, that makes the lab folks happy because it means the drugs are working.
Well I better get off to bed. It is likely to be a long one with chills and sweats. Not to mention the manifold of tubing that is draped across the bed that will be fun to juggle with throughout the night.
George has completed three rounds of shots. He should have his stem cells collected on the apheresis machine tomorrow. I am still on schedule to receive the cells the next day Wednesday, July 31st. He says it isn't too bad, but his bones are achy from the meds. Of course, that makes the lab folks happy because it means the drugs are working.
Well I better get off to bed. It is likely to be a long one with chills and sweats. Not to mention the manifold of tubing that is draped across the bed that will be fun to juggle with throughout the night.
Saturday, July 27, 2013
Two Days of Chemo Down
It has been a busy few days getting settled on the transplant floor. My mom and Aunt Sugar have been here and today my brother arrived. He will get three days of shots to move those stem cells from the bone marrow out into his bloodstream. It will be a lot easier to collect the stem cells from the blood than from 300 sticks to his butt bones to get them from the bone marrow!!! Brant and the kids also came up for a visit, so it was a fun day of company. I love seeing them! One of the doctors spent time talking to us as a family and I think it helped the kids to hear more about the process and their role in the post-transplant care.
Today I got moved to a little larger room and have my own exercise bike in the corner. The doctor emphasized that I am not sick, I am just getting a bone marrow transplant. Daily exercise before, during and after transplant is one of the greatest predictors of a good outcome. So biking will be added to my walking routine. He said some days I will feel like a 9 volt battery was replaced with a AA, but keep moving....
I have had two days of chemo and have two days left. After the first day of my Busulfan dose, they took six timed blood samples. These made the 6pm FedEx drop and were sent to Seattle for pharmo-kinetic testing. Basically to see how fast my body gets rid of chemo. The results came back this afternoon and the doctor will adjust my last two doses based on the lab results. Talk about seriously personalized medicine!! Very cool.
Tomorrow I start ATG in the afternoon. This is my first immunosuppressant drug. My immune system is being taken out by chemo, but this drug will make sure that any remaining stuff will not attack George's cells and that his immune cells don't attack me. Aaahhh - sibling harmony thru pharmacology. Another fascinating tidbit - ATG used to be grown in horse cells, but a woman scientist from Sloan-Kettering published research around 2002 and showed that if it was grown in rabbits the survival rates for bone marrow transplants patients went way up. Her work was immediately adopted by transplant centers worldwide. Ok, I thought it was cool info....
Better head off to bed. Here is hoping and praying tomorrow isn't too rough.
Today I got moved to a little larger room and have my own exercise bike in the corner. The doctor emphasized that I am not sick, I am just getting a bone marrow transplant. Daily exercise before, during and after transplant is one of the greatest predictors of a good outcome. So biking will be added to my walking routine. He said some days I will feel like a 9 volt battery was replaced with a AA, but keep moving....
I have had two days of chemo and have two days left. After the first day of my Busulfan dose, they took six timed blood samples. These made the 6pm FedEx drop and were sent to Seattle for pharmo-kinetic testing. Basically to see how fast my body gets rid of chemo. The results came back this afternoon and the doctor will adjust my last two doses based on the lab results. Talk about seriously personalized medicine!! Very cool.
Tomorrow I start ATG in the afternoon. This is my first immunosuppressant drug. My immune system is being taken out by chemo, but this drug will make sure that any remaining stuff will not attack George's cells and that his immune cells don't attack me. Aaahhh - sibling harmony thru pharmacology. Another fascinating tidbit - ATG used to be grown in horse cells, but a woman scientist from Sloan-Kettering published research around 2002 and showed that if it was grown in rabbits the survival rates for bone marrow transplants patients went way up. Her work was immediately adopted by transplant centers worldwide. Ok, I thought it was cool info....
Better head off to bed. Here is hoping and praying tomorrow isn't too rough.
Thursday, July 25, 2013
Here We Go...
I was admitted today to start my bone marrow transplant. The time at home really flew by and I didn't get to see many people that I wanted to or get as much done around the house as I thought I could. But it was wonderful to almost feel normal for a few days. It was tough leaving home and good-byes are never fun. I apologize to all the folks who were treated to my tears over the last few days. As our kids say, leaving is the hardest part. We are past that now and it is time to settle in and get to work beating this thing while Brant and the kids do their best to keep up a normal routine.
My Aunt (mom's sister) is visiting and came with us up to Richmond to keep mom company for a few days. I started off this morning having a port installed. I already have a central line (double Hickman) but they want more access points to give IV's while I am in the hospital. The procedure went fine but I am pretty sore as expected. Hopefully it will heal up soon. I now have hardware on my right and left side, so maybe I am more balanced...?
Tonight I start my pre-meds. I get an anti-seizure drug because one of the chemo's - Busulfan - has a small chance of causing them. The other chemo drug is Fludarabine. Both will get started tomorrow morning. The chemo will last 4 days and then I wait a day before they transplant me with my brother's cells.
The inpatient process is usually around 3-4 weeks. It is weird to not go outside for that long. After I am released we must stay in the Richmond area for quite a while until my immune system is established and any graft vs host disease is addressed.
They are very strict up here on the transplant floor to prevent infections in the patients. The food selections are pretty limited and are basically sterilized. There is no caffeine either...and that includes chocolate. This could be trouble for me. But they do have Oreos, so I think I can survive.
Thanks for the comments and other messages that are sent my way. They really help encourage me. I am truly blessed with such great support.
My Aunt (mom's sister) is visiting and came with us up to Richmond to keep mom company for a few days. I started off this morning having a port installed. I already have a central line (double Hickman) but they want more access points to give IV's while I am in the hospital. The procedure went fine but I am pretty sore as expected. Hopefully it will heal up soon. I now have hardware on my right and left side, so maybe I am more balanced...?
Tonight I start my pre-meds. I get an anti-seizure drug because one of the chemo's - Busulfan - has a small chance of causing them. The other chemo drug is Fludarabine. Both will get started tomorrow morning. The chemo will last 4 days and then I wait a day before they transplant me with my brother's cells.
The inpatient process is usually around 3-4 weeks. It is weird to not go outside for that long. After I am released we must stay in the Richmond area for quite a while until my immune system is established and any graft vs host disease is addressed.
They are very strict up here on the transplant floor to prevent infections in the patients. The food selections are pretty limited and are basically sterilized. There is no caffeine either...and that includes chocolate. This could be trouble for me. But they do have Oreos, so I think I can survive.
Thanks for the comments and other messages that are sent my way. They really help encourage me. I am truly blessed with such great support.
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