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!
Tuesday, July 30, 2013
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.
Saturday, July 20, 2013
Good Testing Results
My brother (aka Donor) took me up to Richmond on Thursday and Friday to finish up my testing, giving mom some much needed rest from running around. On Thursday they checked me for allergies against six different penicillin related antibiotics. It took all day to advance thru the steps - four rounds of skin pricks at advancing doses, then four rounds of needle sticks under the skin at increasing drug concentration, and finally a "drug challenge" where I took a pill of Amoxicillin. Only the needle step really hurt, and not because of the needle but because the drugs had a big sting when they got under the skin. I didn't test positive for any of them - yeah! The Dr. said I still may develop a drug rash to any of them, but there isn't a concern about an severe anaphylactic type of reaction.
On Friday we were back to check on my heart. The angiogram tube entered at my left wrist and DID NOT feel good. I was hoping to be a bit more out of it but unfortunately they were a little light on the pharmaceuticals.... I and my left forearm were fully aware of them trying to get their tube to all of the correct spots to inject the dye and see the coronary arteries. I probably could have watched it on the monitor if my eyes hadn't been clamped shut. It didn't last too long and the good news is that my coronary arteries all look great. As suspected, the heart damage is most likely caused by previous chemo and may or may not be permanent, but it is not severe enough to impact a normal active lifestyle. George and I were back in Chesapeake by 6pm and I was quite happy for no overnight visit in the hospital.
The kids are home from a fun week at the beach, so we are all finally together as a family under one roof back in Chesapeake. We will have a few days to enjoy each other and I am so thankful to be feeling mostly healthy and well. The plan is to be admitted next Thursday, the 25th. I will do a six day prep regimen and the transplant itself should be on July 31st. I just need to stay healthy and rested before starting the transplant process.
On Friday we were back to check on my heart. The angiogram tube entered at my left wrist and DID NOT feel good. I was hoping to be a bit more out of it but unfortunately they were a little light on the pharmaceuticals.... I and my left forearm were fully aware of them trying to get their tube to all of the correct spots to inject the dye and see the coronary arteries. I probably could have watched it on the monitor if my eyes hadn't been clamped shut. It didn't last too long and the good news is that my coronary arteries all look great. As suspected, the heart damage is most likely caused by previous chemo and may or may not be permanent, but it is not severe enough to impact a normal active lifestyle. George and I were back in Chesapeake by 6pm and I was quite happy for no overnight visit in the hospital.
The kids are home from a fun week at the beach, so we are all finally together as a family under one roof back in Chesapeake. We will have a few days to enjoy each other and I am so thankful to be feeling mostly healthy and well. The plan is to be admitted next Thursday, the 25th. I will do a six day prep regimen and the transplant itself should be on July 31st. I just need to stay healthy and rested before starting the transplant process.
Monday, July 15, 2013
My Donor is Here!!
My brother George has arrived safely from Australia. It was a long flight and he is a bit jet lagged, but assures me that his bone marrow is in good shape - ha ha! We have lots of jokes going on right now as you might imagine. George teases mom for saying "Don't get hit by a car." Like it was ok for him to get hit before, but now that we need his marrow he better not..... Since today was Brant's first day of his new job, George rode with me up to Richmond for my cardiology consult. I have a left ventricle ejection fraction (LVEF) of 47% which is slightly low - they like that above 50%. I also showed 10% damage to the bottom area of the heart, which is considered "moderate" damage. So he wants to do an angiogram to make sure there is not a blockage in the coronary arteries causing the problems. He suspects it is chemo that has caused the heart damage, but I did have radiation to the chest for my Hodgkins treatment and that can cause hardening of the arteries. Better to find out now than to have problems during the stress that will be placed on my system during the transplant process. So I will be up there Friday for that procedure. If everything looks good I will have an admit date of July 25th. If they find a problem they will put in a stint during the same procedure and my transplant date will likely be pushed back. It's not really what I was hoping to find out today, but I am glad they are able to work so quickly to get everything done and to minimize the risk of complications as much as possible.
Over the weekend we headed down to the Outer Banks with the kids. This is supposed to be our annual vacation week we take with four other families in a great big cottage. Brant and I stayed Saturday night and left Sunday afternoon. That was just enough time to get on the beach twice, enjoy some good company, and to have my very own martini invented and prepared by the world's best bartender. Thanks Ron, I think, for the "Dirty Rachel". The kids will stay for the rest of the week with the beach crew - THANK YOU! We love you guys and wish we were there to enjoy the beach and everyone's fantastic cooking!! We are looking forward to next year when we will double up on the relaxation and fun to make up for this year.
Friday, July 12, 2013
One Step Closer to Transplant
It has been very nice to be at home in between my many trips back to Richmond. The only day I wasn't in Richmond this week was Thursday. But the roundtrip drive isn't too bad and well worth it to be at home in the evenings! Earlier this week I did the majority of my pre-transplant testing that included CT scans, pulmonary function, nuclear medicine cardiac stress test, and a psychosocial evaluation (no comments, please...haha). They also did a TON of labwork. I seriously got lightheaded when I saw the table top full of tubes lined up for the blood draw. The lab stickers to go on the tubes was easily 5 feet long. I later found out that it takes between 6 and 10 of these tubes to fill up one shot glass, so that made me feel a little better. I think they took between 15 and 20 tubes.
Today Brant and I spent most of the day in Richmond for our consult visit prior to transplant. They went over the results of my testing and discussed my transplant regimen. We had lots of good news.
First of all, my labwork looks great with very normal numbers by cancer patient standards. My platelets were 209 today. That is normal even for non-cancer patients! The were 20 last Friday, so quite a jump in one week. My bone marrow has definitely kicked back in.
Next, my biopsy was still clear with no evidence of Leukemia. This is great news since it is critical for a successful transplant to start with little to no disease.
I was most excited to learn that they have selected a reduced intensity chemo pre-transplant regimen with no radiation. At first I was surprised and worried that it wouldn't be effective enough. But the doctor said there was no reduced chance for a cure. Then I was a little defensive because this regimen was originally developed for older patients who can't tolerate a standard transplant regimen. I was like "you don't think I can handle it??" The doctor assured me that for my disease type and being in remission this is the regimen they would select regardless of my previous chemo and current organ function. I quickly realized I was arguing for more toxic chemo with a man much smarter than myself and got my ego back in check. Less chemo will be just fine, thank you.
The consult with the transplant doctor was really awesome the way he explained everything and even made some sketches and graphs. My tooly personality loved all the data. It took me back to the couple of physiology and biomedical engineering classes I had in college. And my doctor even got his undergrad in mechanical engineering like me! Everyone we met with today was wonderful and we are once again so impressed with VCU-MCV-Massey as we transition from the oncology group to the transplant team.
The only bit of bad news is that my heart and lungs did show some damage from previous chemo treatments. The lung function isn't too bad but the heart issues will require a consult and clearance from the cardiologist. So back to Richmond I go on Monday. For you cardio people I had reduced left ventricle ejection fraction and I think something about some heart wall damage that could be related to coronary artery problems. A lot of that really didn't sink in but he did say that there was a chance I will need catheterization. I will learn more on Monday and prayers are appreciated that I will not need any procedures.
My tentative admission date is July 24th or 25th. This may slide back depending on what the cardiologist wants to do. The inpatient process will last around 3-4 weeks. Lately I have really been struggling with dreading to go back for more chemo and not wanting to be away from out family. But today was so upbeat that it gave me some more energy and desire to get on with this and take another swing at cancer. I hope it lasts!!
Today Brant and I spent most of the day in Richmond for our consult visit prior to transplant. They went over the results of my testing and discussed my transplant regimen. We had lots of good news.
First of all, my labwork looks great with very normal numbers by cancer patient standards. My platelets were 209 today. That is normal even for non-cancer patients! The were 20 last Friday, so quite a jump in one week. My bone marrow has definitely kicked back in.
Next, my biopsy was still clear with no evidence of Leukemia. This is great news since it is critical for a successful transplant to start with little to no disease.
I was most excited to learn that they have selected a reduced intensity chemo pre-transplant regimen with no radiation. At first I was surprised and worried that it wouldn't be effective enough. But the doctor said there was no reduced chance for a cure. Then I was a little defensive because this regimen was originally developed for older patients who can't tolerate a standard transplant regimen. I was like "you don't think I can handle it??" The doctor assured me that for my disease type and being in remission this is the regimen they would select regardless of my previous chemo and current organ function. I quickly realized I was arguing for more toxic chemo with a man much smarter than myself and got my ego back in check. Less chemo will be just fine, thank you.
The consult with the transplant doctor was really awesome the way he explained everything and even made some sketches and graphs. My tooly personality loved all the data. It took me back to the couple of physiology and biomedical engineering classes I had in college. And my doctor even got his undergrad in mechanical engineering like me! Everyone we met with today was wonderful and we are once again so impressed with VCU-MCV-Massey as we transition from the oncology group to the transplant team.
The only bit of bad news is that my heart and lungs did show some damage from previous chemo treatments. The lung function isn't too bad but the heart issues will require a consult and clearance from the cardiologist. So back to Richmond I go on Monday. For you cardio people I had reduced left ventricle ejection fraction and I think something about some heart wall damage that could be related to coronary artery problems. A lot of that really didn't sink in but he did say that there was a chance I will need catheterization. I will learn more on Monday and prayers are appreciated that I will not need any procedures.
My tentative admission date is July 24th or 25th. This may slide back depending on what the cardiologist wants to do. The inpatient process will last around 3-4 weeks. Lately I have really been struggling with dreading to go back for more chemo and not wanting to be away from out family. But today was so upbeat that it gave me some more energy and desire to get on with this and take another swing at cancer. I hope it lasts!!
Saturday, July 6, 2013
Home Sweet New Home
I am happy to report that they let me leave the hospital on Tuesday afternoon with a plan to return to clinic on Wednesday to get my super-duper-fancy-matched platelets. They told me the platelets were flying in from Wisconsin....and hadn't yet arrived....really?! At clinic on Wednesday I found out that the platelets were not coming from Wisconsin, it was my blood sample that was sent to Wisconsin to be tested and typed. I'm thinking we have a pretty crazy healthcare system if my sample had to go out west to be analyzed... The testing wasn't complete and so obviously there were no matched platelets. But Dr. Perkins had mercy on me and told me to go home for the 4th of July after getting a batch of regular platelets as long as I came back on Friday for labs. Maybe my matched platelets would be ready by then. We couldn't get out of Richmond fast enough!! On Friday my platelets hit 20! They had been 5, 6, and 7 on Mon, Tues, and Wed so this was great news and meant I didn't need a transfusion. Good thing, because they still haven't been able to match my platelets. Now that I am making my own platelets, it isn't such a big deal, but hopefully they will find a solution before next month. Other than that, I am feeling pretty good and have not fainted lately.....lol. Mom doesn't find this as funny to joke about.
My other big news is that we have moved back to Chesapeake, so I came "home" to a new house for the 4th of July. It was really tough to leave Blacksburg. It has been our dream for quite a while to live up there, and we enjoyed our year so much. However, Brant had a good opportunity to go back with his former employer. With everything going on with me, it makes sense to move back closer to family and to not be stretched out three different places across the state! Plus, it is nice having only 1-1/2 hrs between Richmond and the kids. Needless to say Brant has been busy for the last two months getting us moved with no help from me. He has done a great job and it was wonderful to walk into a house (in our old neighborhood) that is 75% unpacked and have a grilled steak dinner at our dining room table to celebrate the 4th of July!
One of the first things I saw on the kitchen counter was a little rock that I had received at a prayer service at church in Blacksburg a while back. The rocks at the service had different names of God inscribed on them and you could pick one that spoke to you. I had taken one that said "The Good Shepherd". I'm not sure how this little rock, that I had tossed onto a shelf months ago, made it onto the new kitchen counter. But seeing it made me smile and reassured me that God has us in His protection and is guiding our journey. Even if the path is NOTHING like I had planned.....
My other big news is that we have moved back to Chesapeake, so I came "home" to a new house for the 4th of July. It was really tough to leave Blacksburg. It has been our dream for quite a while to live up there, and we enjoyed our year so much. However, Brant had a good opportunity to go back with his former employer. With everything going on with me, it makes sense to move back closer to family and to not be stretched out three different places across the state! Plus, it is nice having only 1-1/2 hrs between Richmond and the kids. Needless to say Brant has been busy for the last two months getting us moved with no help from me. He has done a great job and it was wonderful to walk into a house (in our old neighborhood) that is 75% unpacked and have a grilled steak dinner at our dining room table to celebrate the 4th of July!
One of the first things I saw on the kitchen counter was a little rock that I had received at a prayer service at church in Blacksburg a while back. The rocks at the service had different names of God inscribed on them and you could pick one that spoke to you. I had taken one that said "The Good Shepherd". I'm not sure how this little rock, that I had tossed onto a shelf months ago, made it onto the new kitchen counter. But seeing it made me smile and reassured me that God has us in His protection and is guiding our journey. Even if the path is NOTHING like I had planned.....
Monday, July 1, 2013
July...Really??
Wow, I can't believe we started a new month today. It seems like my world is on hold and yet is flying by all at the same time. The bad part is most of the "flying by" stuff is happening outside my little cocoon here in Richmond....:(
My blood counts have still been stubborn. I thought I would be ready to go home after a clinic check last Friday. Instead, they set me up to come in for lab work over the weekend since my platelets were still less than 5 along with low hemoglobin and not many white blood cells. I was feeling a little weaker on Saturday but got my platelets and then enjoyed having lunch with mom on the State Capitol grounds - gorgeous! On Sunday I felt a little weaker and when the nurse had me stand for a blood pressure I did the whole fainting thing again. That got everyone pretty worked up and it landed me back in the hospital with a bright yellow wristband that says "Fall Risk". So I am back over on the 2nd floor checking in on all my great nurses.
I think they are finally taking my platelet issue a little more seriously and I will be getting matched platelets as soon as tomorrow. That will carry over to when I do my transplant and hopefully prevent such an extended period of low platelets during that time. The cardiologist stopped by and assured me that my heart is fine, I just don't have enough blood going around in my system. So I am on a medication to help keep my blood pressure up until my counts recover. And they are giving me a little extra blood to keep my hemoglobin closer to 8 than to 7.
This morning my labwork did show a slight uptick. I am hopeful they will release me tomorrow after platelets or Wednesday at the latest. Of course...I should really know better than to plan...! But for now I have to stay put and be a patient patient. Mom and I continue to do our best Rain Man impersonation by catching Wheel of Fortune and Jeopardy each night after the evening news. I know....it is sad. Tonight Katie will have another All Stars softball game and I look forward to the text updates that the softball moms are so great to send me. They won last night in extra innings after a rain delay. It was 11:30pm!!
Despite the disappointments of being in Richmond and not at home, I am reminded of the many blessings I do have. You don't need to walk the halls of an Oncology clinic or hospital floor very long to realize that! All in all I am quite healthy (for a cancer patient!!) and pain free. Thanks as always for the love, prayers, and support that are sent my way.
My blood counts have still been stubborn. I thought I would be ready to go home after a clinic check last Friday. Instead, they set me up to come in for lab work over the weekend since my platelets were still less than 5 along with low hemoglobin and not many white blood cells. I was feeling a little weaker on Saturday but got my platelets and then enjoyed having lunch with mom on the State Capitol grounds - gorgeous! On Sunday I felt a little weaker and when the nurse had me stand for a blood pressure I did the whole fainting thing again. That got everyone pretty worked up and it landed me back in the hospital with a bright yellow wristband that says "Fall Risk". So I am back over on the 2nd floor checking in on all my great nurses.
I think they are finally taking my platelet issue a little more seriously and I will be getting matched platelets as soon as tomorrow. That will carry over to when I do my transplant and hopefully prevent such an extended period of low platelets during that time. The cardiologist stopped by and assured me that my heart is fine, I just don't have enough blood going around in my system. So I am on a medication to help keep my blood pressure up until my counts recover. And they are giving me a little extra blood to keep my hemoglobin closer to 8 than to 7.
This morning my labwork did show a slight uptick. I am hopeful they will release me tomorrow after platelets or Wednesday at the latest. Of course...I should really know better than to plan...! But for now I have to stay put and be a patient patient. Mom and I continue to do our best Rain Man impersonation by catching Wheel of Fortune and Jeopardy each night after the evening news. I know....it is sad. Tonight Katie will have another All Stars softball game and I look forward to the text updates that the softball moms are so great to send me. They won last night in extra innings after a rain delay. It was 11:30pm!!
Despite the disappointments of being in Richmond and not at home, I am reminded of the many blessings I do have. You don't need to walk the halls of an Oncology clinic or hospital floor very long to realize that! All in all I am quite healthy (for a cancer patient!!) and pain free. Thanks as always for the love, prayers, and support that are sent my way.
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