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.
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