This round of chemo wasn’t quite as smooth as the last. Because the ifosfamide is so hard on my kidneys and bladder, the main blood count that is monitored while I am inpatient is my creatnine (which is a kidney function indicator). My normal creatnine level is 0.7, so any reading above that is cause for concern. While I am inpatient, I receive 6 liters of IV fluids per day to keep this level at 0.7. The day that my chemo finished my creatnine level had elevated to 0.9. After an additional two days in the hospital, the level had come down to 0.8. They agreed to discharge me but I had to wear a backpack with additional IV fluids for four days. My creatnine level was back to 0.7 by the second day.
Because of the concern that I had over my neutropenic fever from Round 9, I had decided to stay in Houston until my blood counts returned to normal, even after I was discharged from the hospital. This usually takes about another week. Fortunately, Gary allowed us to stay in his hotel room again this trip. Thanks again Gary. I take several antibiotics every round to prevent infection, but also if the antibiotic cocktail is just right, they can prevent the fever I have when my counts are low. My fever was so out of control last round that they decided that they would change my antibiotics. They almost succeeded this time. My fever only lasted two days and only got up to 101. As soon as my fever broke, my counts began to rise, and we headed for home.
After ten rounds and eight months of chemotherapy, I have decided to forego the next round in favor of surgery. The surgery is scheduled for February 12, 2009 at Memorial Sloan-Kettering Cancer Center in New York. As you know, we have been discussing surgery options for a while now. Marissa has been very proactive in researching my options regarding surgery.
Marissa and I follow an online forum with other DSRCT patients and family members. This forum provides a wealth of knowledge to us that we would otherwise not have access to. Through this forum, others share their experiences, good and bad, so that people like me may either help them with their needs, or just have the knowledge from their experience for the future. The most helpful part of the forum for me is hearing the others tell the medical advice that they have been given. For me, it is like getting the advice of many doctors for the price of one. As you can imagine, with such a rare disease, there are many opinions on how to treat the disease, and rarely do any two people agree on what would be the best treatment option for a patient. With that said, most everyone on the forum seems to agree that there is one surgeon that stands above the rest. Dr. Laquaglia at MSKCC has performed more surgeries on DSRCT patients than any other surgeon in the world. He is the chief of pediatric surgery with 29 years of experience. While we were in Houston, we met with the surgeon at MD Anderson, Dr. Hayes-Jordan. She, of course, explained the procedure and her experience with DSRCT. When we asked her opinion of Dr. Laquaglia, she had nothing but good things to say. While she would never some out and say this, she seemed to imply that she knew that Dr. Laquaglia was the best and that if he was willing to perform my surgery then I should accept.
With all of the information that I have, I couldn’t think of going with any other option than surgery in New York. The one problem that we have is getting the cooperation of my oncologist, Dr. Trent. I did not finalize my decision until I was out of the hospital. I didn’t want to leave Houston without discussing my decision with him, but he is only in the office to see patients on Thursdays. We spoke to his nurse before we left on Wednesday, January 14, and she assured us that he would call us on our way home and that if he didn’t call, we could page him. Well, today is January 27, and after many messages we are still waiting on that call. He is clearly not on board with my decision to go to New York, and I feel like that may jeopardize my care in the future. Fortunately, his nurse has been helpful in getting Dr. Laquaglia the information that he needs, e.g. clinical dictations, CT scans, blood test, etc. The main reason that I needed to speak to Dr. Trent was to determine whether I should continue with my next scheduled round of chemo before my surgery. Dr. Laquaglia said that he could not advise me because he was not my oncologist but hinted that he would rather I skip it to let my blood counts recover. With no advice from Dr. Trent, I was forced to decide on my own to skip the chemo. At this point, I am really hoping that Dr. Laquaglia can recommend an oncologist at MSKCC so that I never have to go back to Dr. Trent.
Since we returned from Houston on the 14th, things have been rather quiet. On Saturday, the 17th my mom, dad and grandmother were finally able to make their Christmas visit. My grandmother’s visit was a complete and pleasant surprise. They didn’t tell us that she was coming until she got out of the truck. Marissa was babysitting our nephew, Owen, so the rest of us went to eat barbecue and ribs at “Swallow at the Hollow” in Roswell. Sunday morning, we went to our church and a quick lunch afterward. Sunday evening, we were able to meet my cousin Gavin, his wife Amanda, and their two kids, Jackson and Morgan at Fellini’s for pizza. Amanda has since given birth to their third child, McKenzie Marie, on January 24. Congratulations, Gavin and Amanda. My parents and grandmother returned home on Monday, the 19th. As always, the visit was too short, but we hope they enjoyed being here as much as we enjoyed having them.
Fortunately, I am feeling just as well after the 10th round of chemo as I was after the 9th. Also, because I have some extra time to recover before surgery, I have been able to enjoy some normal activities. I have made a few visits to work, worked on some small projects around the house, and had some quality time to spend with Marissa. I just feel very blessed to have taken this second chemo regimen so well.
We will be leaving for New York on Saturday, February 7th. I have a consult with Dr. Laquaglia on Monday, February 9th. February 10th and 11th will be full of CT scans and blood tests. Surgery is scheduled for February 12th. I was told to expect two days in the ICU and then an additional ten days in the hospital after that. I will have Marissa make a post following surgery to give an update. Thanks again for all of your support and prayers.
Tuesday, January 27, 2009
Sunday, January 4, 2009
Round 10 Of Chemotherapy To Start The New Year
Let me start by wishing everyone a Happy New Year. The holidays went by so quickly this year and thankfully I was feeling good enough to enjoy them. After my last round of chemotherapy, the ER visit for my fever, and the blood transfusion I felt better than I have felt in a long time. We spent Christmas Day at Marissa’s sister’s house with her family. Friday, December 26 Marissa and I spent preparing for the arrival of my family. I felt so well that I cleaned out our garage, the inside and outside of our car, and helped with the housework, and believe it or not I actually enjoyed being able to clean.
My sister Lori, her husband Steve, and my other sister’s son, Hunter, arrived on Saturday, December 27. This was the first time they had ever been to our house and for a visit to Atlanta. That evening I took Hunter to the Ferrari dealership so he could see them up close and in person. Then we all went downtown to Centennial Olympic Park which was still lit up for Christmas with outdoor ice skating. We showed them a little bit more of downtown Atlanta, and ate at Felini’s Pizza, one of Marissa and my favorites.
Sunday, December 28 my brother Frankie, his wife Doris, and Hunter’s brother Dawson arrived. Marissa and Lori spent most of the day cooking for our big meal that night which we all enjoyed upon Frankie’s arrival. We spent the rest of the night digesting our food and relaxing at our house.
Monday, December 29 we all went to the aquarium downtown. We spent most of the day there as it was so crowded. We had a great time at the aquarium and viewing the Titanic exhibit they had there. Lori and Steve left after the aquarium to head back home, they both had to work on Tuesday. We all ate at Chili’s for lunch at 5:30 pm (which was more like dinner) because traffic was so bad that this was the first opportunity we had to eat. After that we all went back to our house and hung out. We were all pretty warn out from our long day.
Frankie, Doris, Dawson, and Hunter all left the next afternoon, Tuesday, December 30. The rest of the day Marissa and I spent taking down Christmas decorations and packing for our trip to Houston.
Wednesday, December 31 we rang in the New Year while driving to Houston. We arrived in Houston Thursday, January 1. We went out to dinner with Gary that night, and he allowed us to stay with him again at his hotel.
Friday, January 2 I had lab work and a chest xray and then met with Dr. Trent. We discussed my fever from the last round and were told that it could have potentially been a life threatening situation. That being said we have decided to stay in Houston until my blood counts return to normal after this round of chemotherapy. We are also going to be meeting with a surgeon while we are here to discuss surgical options. Back in November Marissa and I sent my medical records and scans to a pediatric surgeon in New York at Memorial Sloan Kettering Cancer Center. Dr. LaQuaglia is a highly renowned surgeon who specializes in Desmoplastic Small Round Cell Tumor resections. Dr. LaQuaglia reviewed my records and scans and feels that I am a good candidate for surgery. We are very pleased that surgery seems to be a fast approaching option. That being said, it also brings about new concerns, frustrations, and worries. After discussing this with Dr. Trent he recommended a pediatric surgeon at MD Anderson named Dr. Hayes-Jordan. Marissa and I will meet with her during this visit to compare surgeons and all of our options.
I began my 10th round of chemotherapy Friday night at about 4 am. I will be on my 5th dose tonight(Sunday, January 4) with 2 more to go for a total of 7 doses. I will finish Tuesday morning, and will probably be released on Wednesday the 7th or Thursday the 8th of January. Then it is just a matter of my counts returning to normal. Hopefully I will not experience another fever, but if I do at least I am in Houston under Dr.Trent’s care.
We go home only briefly before having to return to Houston for scans January 22. These scans are very important as they will tell exactly how the new chemo is working, as well as depict how soon my surgery will be. We thank everyone for their support and continue to ask for prayers for healing as well as for guidance on all of our upcoming decisions.
My sister Lori, her husband Steve, and my other sister’s son, Hunter, arrived on Saturday, December 27. This was the first time they had ever been to our house and for a visit to Atlanta. That evening I took Hunter to the Ferrari dealership so he could see them up close and in person. Then we all went downtown to Centennial Olympic Park which was still lit up for Christmas with outdoor ice skating. We showed them a little bit more of downtown Atlanta, and ate at Felini’s Pizza, one of Marissa and my favorites.
Sunday, December 28 my brother Frankie, his wife Doris, and Hunter’s brother Dawson arrived. Marissa and Lori spent most of the day cooking for our big meal that night which we all enjoyed upon Frankie’s arrival. We spent the rest of the night digesting our food and relaxing at our house.
Monday, December 29 we all went to the aquarium downtown. We spent most of the day there as it was so crowded. We had a great time at the aquarium and viewing the Titanic exhibit they had there. Lori and Steve left after the aquarium to head back home, they both had to work on Tuesday. We all ate at Chili’s for lunch at 5:30 pm (which was more like dinner) because traffic was so bad that this was the first opportunity we had to eat. After that we all went back to our house and hung out. We were all pretty warn out from our long day.
Frankie, Doris, Dawson, and Hunter all left the next afternoon, Tuesday, December 30. The rest of the day Marissa and I spent taking down Christmas decorations and packing for our trip to Houston.
Wednesday, December 31 we rang in the New Year while driving to Houston. We arrived in Houston Thursday, January 1. We went out to dinner with Gary that night, and he allowed us to stay with him again at his hotel.
Friday, January 2 I had lab work and a chest xray and then met with Dr. Trent. We discussed my fever from the last round and were told that it could have potentially been a life threatening situation. That being said we have decided to stay in Houston until my blood counts return to normal after this round of chemotherapy. We are also going to be meeting with a surgeon while we are here to discuss surgical options. Back in November Marissa and I sent my medical records and scans to a pediatric surgeon in New York at Memorial Sloan Kettering Cancer Center. Dr. LaQuaglia is a highly renowned surgeon who specializes in Desmoplastic Small Round Cell Tumor resections. Dr. LaQuaglia reviewed my records and scans and feels that I am a good candidate for surgery. We are very pleased that surgery seems to be a fast approaching option. That being said, it also brings about new concerns, frustrations, and worries. After discussing this with Dr. Trent he recommended a pediatric surgeon at MD Anderson named Dr. Hayes-Jordan. Marissa and I will meet with her during this visit to compare surgeons and all of our options.
I began my 10th round of chemotherapy Friday night at about 4 am. I will be on my 5th dose tonight(Sunday, January 4) with 2 more to go for a total of 7 doses. I will finish Tuesday morning, and will probably be released on Wednesday the 7th or Thursday the 8th of January. Then it is just a matter of my counts returning to normal. Hopefully I will not experience another fever, but if I do at least I am in Houston under Dr.Trent’s care.
We go home only briefly before having to return to Houston for scans January 22. These scans are very important as they will tell exactly how the new chemo is working, as well as depict how soon my surgery will be. We thank everyone for their support and continue to ask for prayers for healing as well as for guidance on all of our upcoming decisions.
Wednesday, December 17, 2008
Traveling To Houston, New Chemo And The Holidays
Marissa and I have been very busy since our last post. I finished my 8th and final round of Ifosfamide and Adriamycin, and I was not sad to see that regimen over with. After my usual “bad” week after chemo, I was feeling well enough to travel. Marissa and I left to go to Knoxville, TN to spend Thanksgiving with Marissa’s mom and grandmother the Monday before Thanksgiving. We were able to spend a week there before having to leave again for Houston. We had a great time and really enjoyed getting away. It had been almost a year since our last visit to Knoxville, and we had a lot of fun doing some of the things we always enjoyed when we lived there. It also gave us a chance to visit with some friends we hadn’t seen in awhile. Our dogs went with us, and they stayed in Knoxville while we went on to Houston the following Monday.
We arrived in Houston on Tuesday, December 2. This visit we actually had someone to greet us when we arrived. Marissa’s mom’s husband, Gary, is in Houston working for FEMA. He gave us his hotel room for several nights, it was only about a block away from MD Anderson, and we all went out to dinner a couple of times during our stay. This made our stay in Houston go by much quicker, and we enjoyed being able to visit with Gary.
Wednesday, December 3 my lab work and scans were performed. Thursday, December 4 we met with Dr. Trent. Dr. Trent told us that the chemotherapy was still working well and shrinking my masses. Of course Marissa and I were happy and very grateful for this news. We then decided to stay in Houston for my 9th round of chemo, as it was a new regimen and required me to be inpatient for 5 days. We decided we were more comfortable receiving this treatment at MD Anderson. I was scheduled to be admitted right after my appointment with Dr. Trent. However, we were sent back to the hotel as no rooms were available. So, Gary gave up his hotel room for another night, and Friday, December 5 I would be admitted.
Friday, December 5 I finally received a phone call from MD Anderson at 5 p.m. telling me my room would be ready around 6:30 p.m. So Friday evening Marissa and I settled in, and I prepared to start my 9th round of chemotherapy. This regimen consists of high dose Ifosfamide only. It is given inpatient because of all of the fluids that must accompany it, as well as monitoring my kidneys daily. There are many pre-medications to receive before the Ifosfamide. The Ifosfamide runs every 12 hours for 2 hours for a total of 7 courses. My first course of Ifosfamide began at 2 a.m. Over the next couple of days I experienced some nausea, but discovered I preferred to be inpatient. Before with my outpatient chemotherapy I had to bring home back packs with infusion pumps that gave me continuous chemo and fluids, and I did not enjoy lugging those heavy packs around. Tuesday, December 9 I received my last dose of Ifosfamide at 2 a.m. All of my lab work was coming back great so I was on track to be released Wednesday, December 10.
Wednesday, December 10 I was told I could be discharged, but there was a catch. I had been receiving over 6 liters of fluids a day and to be released I would have to be able to drink over 2 liters on my own. I was having a hard time drinking as I was feeling nauseous, so Marissa and I discussed it and we decided the best thing to do was to stay in the hospital 1 more day. We were concerned about such a long trip home and we wanted to play it safe. The rest of Wednesday I received fluids, and the next day I would be released. All in all my inpatient experience was very pleasant, and the nurses were really great.
Thursday, December 11 I was released as promised at about noon. Marissa had the car all packed, and we left for home straight from the hospital. We decided to make the drive all in one day so I would be back at home in case I needed fluids. We arrived at home in GA at about 4 a.m. Friday morning. Driving straight through made one really long ride for me and one really long drive for Marissa. Needless to say, we were very glad to be home. Friday, December 12 we were relaxing at home with our dogs, who were delivered that afternoon.
Saturday, December 12 I had a sudden fever. Later that evening it was only getting higher so Marissa and I headed for the ER at Emory Crawford Long. They took several blood cultures to send off, took some lab work, a chest x-ray and gave me fluids. When my lab results came back we learned that my white blood cells were only at 0.2. On Thursday before we left Houston they were at 16. We did not anticipate them falling so quickly, but then again with this new chemo we did not really know what to expect. My fever was due to my low white blood cell count (neutropenic fever), just as I had experienced my first round of chemo. The doctor on call wanted to admit me and give me IV antibiotics until my blood cultures came back. This would take between 24-72 hours. As I am already on preventative antibiotics I decided with my low white blood cell count I would probably be better off at home. From Saturday until Tuesday, December 16 I had a high fever and had to take Tylenol almost around the clock. My blood cultures did come back during this time and were negative for infection.
That brings us up to today, Wednesday, December 17. My fever is gone, but my lab work today showed that my hemoglobin is low (7.5). While all of my other counts (white blood cells, platelets) have started to come back up my hemoglobin is falling. Tomorrow, Thursday, December 18 I will go in for an outpatient blood transfusion. This will be my second transfusion. The first time they did not catch my low hemoglobin until it was 6.6, this made me have to receive the transfusion inpatient as it was necessary to get it that same day. That time I received 3 units of packed red blood cells, tomorrow I will receive 2. This should be enough to boost my hemoglobin to above 9 and prevent me from needing blood over the holidays (hopefully). Despite the fever and blood transfusion I have not felt as bad after the chemo with this new regimen. Hopefully this continues to be the case, and that the next round I will not have the fever and low hemoglobin to deal with.
As far as Christmas celebrations go, Marissa’s family got together this past Sunday while her mom and grandmother were in town. With my fever I was not able to go, but Marissa did bring me home a plate of dinner which I did get to enjoy. My family is planning on coming to Georgia to visit and celebrate Christmas the Saturday after Christmas. I am very excited about this as my siblings have not ever even seen our home in Georgia. We have decided again to travel to Houston for my next round of chemo, we are more comfortable with my care and treatment there. We will be leaving on December 31 with my chemo being scheduled inpatient to begin on Friday, January 2.
Marissa and I wish you all a very Merry Christmas filled with family and loved ones and a safe, happy, healthy New Year.
We arrived in Houston on Tuesday, December 2. This visit we actually had someone to greet us when we arrived. Marissa’s mom’s husband, Gary, is in Houston working for FEMA. He gave us his hotel room for several nights, it was only about a block away from MD Anderson, and we all went out to dinner a couple of times during our stay. This made our stay in Houston go by much quicker, and we enjoyed being able to visit with Gary.
Wednesday, December 3 my lab work and scans were performed. Thursday, December 4 we met with Dr. Trent. Dr. Trent told us that the chemotherapy was still working well and shrinking my masses. Of course Marissa and I were happy and very grateful for this news. We then decided to stay in Houston for my 9th round of chemo, as it was a new regimen and required me to be inpatient for 5 days. We decided we were more comfortable receiving this treatment at MD Anderson. I was scheduled to be admitted right after my appointment with Dr. Trent. However, we were sent back to the hotel as no rooms were available. So, Gary gave up his hotel room for another night, and Friday, December 5 I would be admitted.
Friday, December 5 I finally received a phone call from MD Anderson at 5 p.m. telling me my room would be ready around 6:30 p.m. So Friday evening Marissa and I settled in, and I prepared to start my 9th round of chemotherapy. This regimen consists of high dose Ifosfamide only. It is given inpatient because of all of the fluids that must accompany it, as well as monitoring my kidneys daily. There are many pre-medications to receive before the Ifosfamide. The Ifosfamide runs every 12 hours for 2 hours for a total of 7 courses. My first course of Ifosfamide began at 2 a.m. Over the next couple of days I experienced some nausea, but discovered I preferred to be inpatient. Before with my outpatient chemotherapy I had to bring home back packs with infusion pumps that gave me continuous chemo and fluids, and I did not enjoy lugging those heavy packs around. Tuesday, December 9 I received my last dose of Ifosfamide at 2 a.m. All of my lab work was coming back great so I was on track to be released Wednesday, December 10.
Wednesday, December 10 I was told I could be discharged, but there was a catch. I had been receiving over 6 liters of fluids a day and to be released I would have to be able to drink over 2 liters on my own. I was having a hard time drinking as I was feeling nauseous, so Marissa and I discussed it and we decided the best thing to do was to stay in the hospital 1 more day. We were concerned about such a long trip home and we wanted to play it safe. The rest of Wednesday I received fluids, and the next day I would be released. All in all my inpatient experience was very pleasant, and the nurses were really great.
Thursday, December 11 I was released as promised at about noon. Marissa had the car all packed, and we left for home straight from the hospital. We decided to make the drive all in one day so I would be back at home in case I needed fluids. We arrived at home in GA at about 4 a.m. Friday morning. Driving straight through made one really long ride for me and one really long drive for Marissa. Needless to say, we were very glad to be home. Friday, December 12 we were relaxing at home with our dogs, who were delivered that afternoon.
Saturday, December 12 I had a sudden fever. Later that evening it was only getting higher so Marissa and I headed for the ER at Emory Crawford Long. They took several blood cultures to send off, took some lab work, a chest x-ray and gave me fluids. When my lab results came back we learned that my white blood cells were only at 0.2. On Thursday before we left Houston they were at 16. We did not anticipate them falling so quickly, but then again with this new chemo we did not really know what to expect. My fever was due to my low white blood cell count (neutropenic fever), just as I had experienced my first round of chemo. The doctor on call wanted to admit me and give me IV antibiotics until my blood cultures came back. This would take between 24-72 hours. As I am already on preventative antibiotics I decided with my low white blood cell count I would probably be better off at home. From Saturday until Tuesday, December 16 I had a high fever and had to take Tylenol almost around the clock. My blood cultures did come back during this time and were negative for infection.
That brings us up to today, Wednesday, December 17. My fever is gone, but my lab work today showed that my hemoglobin is low (7.5). While all of my other counts (white blood cells, platelets) have started to come back up my hemoglobin is falling. Tomorrow, Thursday, December 18 I will go in for an outpatient blood transfusion. This will be my second transfusion. The first time they did not catch my low hemoglobin until it was 6.6, this made me have to receive the transfusion inpatient as it was necessary to get it that same day. That time I received 3 units of packed red blood cells, tomorrow I will receive 2. This should be enough to boost my hemoglobin to above 9 and prevent me from needing blood over the holidays (hopefully). Despite the fever and blood transfusion I have not felt as bad after the chemo with this new regimen. Hopefully this continues to be the case, and that the next round I will not have the fever and low hemoglobin to deal with.
As far as Christmas celebrations go, Marissa’s family got together this past Sunday while her mom and grandmother were in town. With my fever I was not able to go, but Marissa did bring me home a plate of dinner which I did get to enjoy. My family is planning on coming to Georgia to visit and celebrate Christmas the Saturday after Christmas. I am very excited about this as my siblings have not ever even seen our home in Georgia. We have decided again to travel to Houston for my next round of chemo, we are more comfortable with my care and treatment there. We will be leaving on December 31 with my chemo being scheduled inpatient to begin on Friday, January 2.
Marissa and I wish you all a very Merry Christmas filled with family and loved ones and a safe, happy, healthy New Year.
Saturday, November 8, 2008
A Night In The Hospital
I finished my 7th round of chemotherapy on 10/24/08, and it was another very tough round for me. The week after chemo is usually my “bad” week, and the following week is usually my “good” week. Well, not this round. Saturday, 11/1/08 ordinarily would have begun my week of feeling much better, where I can actually get out and enjoy doing things before chemo starts again. This time however, I was just not feeling better. We have been told that each round can affect me differently, so we just thought I would perk up a day or so later. By Monday 11/3/08 I was still not feeling better. My home health care nurse came and drew my blood as she normally does on Mondays, but Marissa and I were surprised by the results we received on Tuesday.
When Sharon, our nurse, called us with my lab report she told me that my hemoglobin was only 6.6 which was very low. She said she was calling Dr. D’Amato because she felt I needed a blood transfusion. Sure enough, about an hour later Marissa and I got the phone call to go to Emory Crawford Long for a 23 hour admission and blood transfusion. Upon arrival the doctor told us that they normally administer transfusions at 7.0, and that if I had been older and my hemoglobin was that low I would not have even been able to walk. We felt this explained why I was still feeling so weak and so tired. The doctor was also very impressed that I had not ever had a blood transfusion prior to this, and she told us this would make me feel better within hours. I was definitely looking forward to that.
We checked into the hospital at around 2:30 pm on Tuesday 11/4/08. I was typed and cross matched and it was confirmed that my blood type is A+. At around 9 pm I was given my first of three units that each take 3-4 hours to run. I was given each unit back to back throughout the night. It was a long night as the nurses were in taking my vitals and changing out my IV often. This was also election night and as soon as Obama was elected President people came out of the woodwork to celebrate, scream, and honk their horns in downtown Atlanta. This began at 11 pm and lasted until 3 am when police finally arrived and soon after the streets were quiet. The next morning my labs were drawn again, and I would be discharged based upon the results. At 11 am my results came back. My hemoglobin increased to 9.5, but unfortunately I wasn’t feeling much better as promised. My lab work revealed that my potassium was only 2.7. The low end of normal for potassium is 3.5 so 2.7 is low, and it had dropped from the day before. This most likely explained why I still was not feeling very well, as well as my poor night’s sleep. I was going to have to stay in the hospital for another 4 hours to receive potassium through IV fluids. I told the doctor that my home health nurse could come and administer the potassium, so the orders were faxed, and I escaped staying prisoner in the hospital. I was discharged around noon on 11/5/08.
Thursday, 11/6 I felt some better but not much. I received potassium at home and my blood work showed my potassium was up to 3.1. Friday, 11/7 I was given more potassium at home which should have been enough to bring my levels up to 3.5. I finally began feeling significantly better on Friday and was able to get out, for more or less the first time in 2 ½ weeks, with exception of my hospital adventure.
This was the hardest round I have had, and I hope it is better this coming round. I had a fever higher than normal, my white blood cells did not return to normal as quickly as usual, of course my low hemoglobin, and my low potassium all added to my “routine” symptoms. As a side note I received my results from the MUGA scan (the heart test I had 3 weeks ago), and my heart is functioning just fine. We are definitely thankful for this news. I begin my 8th round of chemotherapy on Monday, November 10. I had very few “good” days this time and chemo time has come all too soon. This round I will speak to the doctor about altering some of my precautionary antibiotics as with our research we have found I should not be taking Levoquin with low potassium, as it may contribute to that, as well as having a low white blood cell count. Too bad we are just now figuring this out. We will see if a new antibiotic alleviates any of my post chemo symptoms. It is hard to predict as my chemo and my antibiotics, as well as several other factors, all result in the same symptoms. This is my last round of this chemo regimen, next round I begin one that is not supposed to be so hard on me. I really hope this is the case, and as far as round 8 goes we are praying it is not nearly as hard as the last.
When Sharon, our nurse, called us with my lab report she told me that my hemoglobin was only 6.6 which was very low. She said she was calling Dr. D’Amato because she felt I needed a blood transfusion. Sure enough, about an hour later Marissa and I got the phone call to go to Emory Crawford Long for a 23 hour admission and blood transfusion. Upon arrival the doctor told us that they normally administer transfusions at 7.0, and that if I had been older and my hemoglobin was that low I would not have even been able to walk. We felt this explained why I was still feeling so weak and so tired. The doctor was also very impressed that I had not ever had a blood transfusion prior to this, and she told us this would make me feel better within hours. I was definitely looking forward to that.
We checked into the hospital at around 2:30 pm on Tuesday 11/4/08. I was typed and cross matched and it was confirmed that my blood type is A+. At around 9 pm I was given my first of three units that each take 3-4 hours to run. I was given each unit back to back throughout the night. It was a long night as the nurses were in taking my vitals and changing out my IV often. This was also election night and as soon as Obama was elected President people came out of the woodwork to celebrate, scream, and honk their horns in downtown Atlanta. This began at 11 pm and lasted until 3 am when police finally arrived and soon after the streets were quiet. The next morning my labs were drawn again, and I would be discharged based upon the results. At 11 am my results came back. My hemoglobin increased to 9.5, but unfortunately I wasn’t feeling much better as promised. My lab work revealed that my potassium was only 2.7. The low end of normal for potassium is 3.5 so 2.7 is low, and it had dropped from the day before. This most likely explained why I still was not feeling very well, as well as my poor night’s sleep. I was going to have to stay in the hospital for another 4 hours to receive potassium through IV fluids. I told the doctor that my home health nurse could come and administer the potassium, so the orders were faxed, and I escaped staying prisoner in the hospital. I was discharged around noon on 11/5/08.
Thursday, 11/6 I felt some better but not much. I received potassium at home and my blood work showed my potassium was up to 3.1. Friday, 11/7 I was given more potassium at home which should have been enough to bring my levels up to 3.5. I finally began feeling significantly better on Friday and was able to get out, for more or less the first time in 2 ½ weeks, with exception of my hospital adventure.
This was the hardest round I have had, and I hope it is better this coming round. I had a fever higher than normal, my white blood cells did not return to normal as quickly as usual, of course my low hemoglobin, and my low potassium all added to my “routine” symptoms. As a side note I received my results from the MUGA scan (the heart test I had 3 weeks ago), and my heart is functioning just fine. We are definitely thankful for this news. I begin my 8th round of chemotherapy on Monday, November 10. I had very few “good” days this time and chemo time has come all too soon. This round I will speak to the doctor about altering some of my precautionary antibiotics as with our research we have found I should not be taking Levoquin with low potassium, as it may contribute to that, as well as having a low white blood cell count. Too bad we are just now figuring this out. We will see if a new antibiotic alleviates any of my post chemo symptoms. It is hard to predict as my chemo and my antibiotics, as well as several other factors, all result in the same symptoms. This is my last round of this chemo regimen, next round I begin one that is not supposed to be so hard on me. I really hope this is the case, and as far as round 8 goes we are praying it is not nearly as hard as the last.
Monday, October 20, 2008
Houston Results, Round 7
Marissa and I have just returned from our latest trip to Houston. Again, because of Hurricane Ike we had a difficult time finding a hotel to stay at in Houston. We left last week to travel, with my lab work, chest x-ray, and cat scan scheduled for Wednesday, October 15. We were scheduled to meet with Dr. Trent on Thursday, October 16. After a long, nerve racking 3 hour wait for Dr. Trent we finally heard the test results. The chemotherapy is still working well and Dr. Trent, Marissa, and I were all very, very excited. We feel truly grateful and exceptionally blessed.
The plan for now is to continue with two more cycles of the same chemotherapy (Adriamycin and Ifosfamide). The Adriamycin can be hard on the heart so it is usually stopped after 6 rounds. However, Dr. Trent feels confident that it will be fine to continue another 2 rounds of this regimen. A heart scan is scheduled just to be completely sure it has not had a negative effect on my heart. After those next 2 rounds I will do 4 rounds of only high dose Ifosfamide. This can still be done at Emory Crawford Long in Atlanta, but it will have to be done inpatient. I am not looking forward to a week hospital stay every 3 weeks, but thankfully this will only last 4 rounds. Then I will do another 4 rounds of chemotherapy that consists of a daily injection for 5 days every 2 weeks. This can also be done in Atlanta and is not supposed to have as many side effects as the other chemo drugs. We will continue to travel to Houston every 6 weeks for tests.
As for now, I have started my 7th round of chemotherapy today, October 20. With each new round my symptoms seem a little more persistent and they linger a little bit longer. I am excited to be moving on to chemo that may not take such a physical toll on me.
We thank everyone for their constant prayers. We firmly believe I keep getting such great reports because of everyone’s prayers. It is very important that the chemotherapy continue to work and that my masses do not become resistant to the chemotherapy. We ask everyone for their continued prayers, praying that the chemotherapy continues to work and remove the cancer from my body, as well as continued blessings into the future. Again, we are grateful for our wonderful news, and also the support of family, friends, and even kind strangers.
The plan for now is to continue with two more cycles of the same chemotherapy (Adriamycin and Ifosfamide). The Adriamycin can be hard on the heart so it is usually stopped after 6 rounds. However, Dr. Trent feels confident that it will be fine to continue another 2 rounds of this regimen. A heart scan is scheduled just to be completely sure it has not had a negative effect on my heart. After those next 2 rounds I will do 4 rounds of only high dose Ifosfamide. This can still be done at Emory Crawford Long in Atlanta, but it will have to be done inpatient. I am not looking forward to a week hospital stay every 3 weeks, but thankfully this will only last 4 rounds. Then I will do another 4 rounds of chemotherapy that consists of a daily injection for 5 days every 2 weeks. This can also be done in Atlanta and is not supposed to have as many side effects as the other chemo drugs. We will continue to travel to Houston every 6 weeks for tests.
As for now, I have started my 7th round of chemotherapy today, October 20. With each new round my symptoms seem a little more persistent and they linger a little bit longer. I am excited to be moving on to chemo that may not take such a physical toll on me.
We thank everyone for their constant prayers. We firmly believe I keep getting such great reports because of everyone’s prayers. It is very important that the chemotherapy continue to work and that my masses do not become resistant to the chemotherapy. We ask everyone for their continued prayers, praying that the chemotherapy continues to work and remove the cancer from my body, as well as continued blessings into the future. Again, we are grateful for our wonderful news, and also the support of family, friends, and even kind strangers.
Tuesday, September 30, 2008
Houston Results, Rounds 5 & 6
After many weeks, it is certainly time for a long awaited update. After Round 4 of chemotherapy Marissa and I were scheduled to return to Houston for testing. “Gustav” had just passed through Louisiana and was headed to Houston, this made planning for travel slightly complicated. After checking and double checking that MD Anderson would be open and that Houston did not receive much damage, we left for Houston on Tuesday, September 2. We decided not to travel our usual route of I-10, as much of it was closed, we would instead travel on I-20. Traffic was not too bad, but we had a horrible time finding a hotel that night. We stopped in Mississippi and after initially stopping to find a hotel at 8pm, we had to continue driving until well past 10pm, as all of the hotels were booked solid along the way. It was pouring down rain and eventually we had to take what we could get. We arrived in Houston on Wednesday, September 3.
Thursday, September 4 began my long battery of tests. Around 11am I started the tests with lab work and a chest x-ray to follow. At 4:40pm my abdominal and pelvic cat scans were scheduled to begin. Last time I had to have a cat scan it was a ten hour day so I was definitely dreading all of the wait time. However, this cat scan was scheduled at a MD Anderson building across from the hospital and when we arrived we were 1 of 4 people waiting. Marissa and I left there by 6pm which was much better than the previous time.
Friday, September 5 we were to meet with Dr. Trent at 11am. After two long hours of waiting for him, we received the news that we had been praying for. The chemotherapy was working even better my 3rd and 4th rounds of chemotherapy than it did my 1st and 2nd. Overall my masses had shrunk by 30%. Marissa and I were so excited, as was Dr. Trent. He also told us that I would be continuing the chemotherapy for as long as it continued to work so well. This was not the exact news that I wanted to hear, but I still felt tremendously excited that all was working so well, which makes enduring all of the chemotherapy a little easier and definitely worth it.
We left to return home immediately after our doctor’s appointment. This time however, we decided to stop sooner to find a hotel. We arrived home on Saturday, September 6. We used the rest of the weekend to run errands and prepare before my 5th round of chemotherapy, which was scheduled for Monday, September 8.
My 5th round of chemotherapy was not an easy one, and the following week was even worse. On my “good” week Marissa and I celebrated our 4th wedding anniversary, and I just enjoyed feeling so well. My one “good” week goes by entirely too fast, and before I know it, it is time to start my chemotherapy again.
That leads us up to this week. I am on my second day (Tuesday, September 30) of my 6th round of chemotherapy. I have begun feeling worse sooner this time. After this round of treatment we are scheduled to return to Houston yet again, for more tests. We will be traveling the week of October 13, and hopefully will be able to return home as quickly as we did last month, especially after this last hurricane, “Ike”, we are not sure what shape we will find Houston to be in.
We are rejoicing in the wonderful news I received. We thank everyone for their continued prayers, and we pray for continued blessings this next visit to Houston as well as into the future.
Thursday, September 4 began my long battery of tests. Around 11am I started the tests with lab work and a chest x-ray to follow. At 4:40pm my abdominal and pelvic cat scans were scheduled to begin. Last time I had to have a cat scan it was a ten hour day so I was definitely dreading all of the wait time. However, this cat scan was scheduled at a MD Anderson building across from the hospital and when we arrived we were 1 of 4 people waiting. Marissa and I left there by 6pm which was much better than the previous time.
Friday, September 5 we were to meet with Dr. Trent at 11am. After two long hours of waiting for him, we received the news that we had been praying for. The chemotherapy was working even better my 3rd and 4th rounds of chemotherapy than it did my 1st and 2nd. Overall my masses had shrunk by 30%. Marissa and I were so excited, as was Dr. Trent. He also told us that I would be continuing the chemotherapy for as long as it continued to work so well. This was not the exact news that I wanted to hear, but I still felt tremendously excited that all was working so well, which makes enduring all of the chemotherapy a little easier and definitely worth it.
We left to return home immediately after our doctor’s appointment. This time however, we decided to stop sooner to find a hotel. We arrived home on Saturday, September 6. We used the rest of the weekend to run errands and prepare before my 5th round of chemotherapy, which was scheduled for Monday, September 8.
My 5th round of chemotherapy was not an easy one, and the following week was even worse. On my “good” week Marissa and I celebrated our 4th wedding anniversary, and I just enjoyed feeling so well. My one “good” week goes by entirely too fast, and before I know it, it is time to start my chemotherapy again.
That leads us up to this week. I am on my second day (Tuesday, September 30) of my 6th round of chemotherapy. I have begun feeling worse sooner this time. After this round of treatment we are scheduled to return to Houston yet again, for more tests. We will be traveling the week of October 13, and hopefully will be able to return home as quickly as we did last month, especially after this last hurricane, “Ike”, we are not sure what shape we will find Houston to be in.
We are rejoicing in the wonderful news I received. We thank everyone for their continued prayers, and we pray for continued blessings this next visit to Houston as well as into the future.
Friday, August 22, 2008
Round 4 At Home
We’re home! We left Houston on Friday August 8, 2008 and returned home to Georgia on Saturday August 9, 2008. Marissa’s mom and Gary met us at our house with the boys (Paddington and Yogi), who were just as excited to see us as we were to see them. As soon as we walked in the door at our house we noticed our home makeover immediately. All of the projects that we had started had been finished thanks to Christine, Gary, Meaghan, Nathan, Maison, and Ashleigh. They even tackled some projects of their own inside and out. Sunday we went to Meaghan’s and we were surprised by a dinner party with everyone there to celebrate my return. Thank you everybody for all of your hard work and thoughtfulness, you really made coming home special, and our house looks so good we didn’t even recognize it.
Monday August 11, 2008 we met with my new doctor in Georgia, Dr. D’Amato at Emory Crawford Long. She came to Atlanta from Tampa to start up a Sarcoma Department at the hospital. Dr. D’Amato was very informative and very personable, and Marissa and I both really liked her. My chemotherapy was scheduled to start on Monday August 18, 2008.
The rest of the week we spent unpacking, settling back into our house, and getting reacquainted with our dogs. I went to work to visit everyone and catch up on all that had been happening, and Marissa went and watched Jack a couple of days. Saturday we had everyone over to hang out and have pizza before chemo began again, it is so nice being home and having visitors.
Monday August 18, 2008 we left for Emory Crawford Long at 7am. We didn’t get home that night until 7pm, and we were both exhausted. The day was filled with my usual chemo regimen but the staff had to familiarize themselves with my orders and medications. It took a little longer because typically a patient receiving my chemo at this hospital is admitted all week as an inpatient. Since I preferred to remain outpatient the typical little kinks had to be worked out. Marissa and I also had to get used to the way Emory Crawford Long does things-everywhere is different.
Round 4 has not been as bad as Round 3, and I am thankful for that. I have experienced some nausea and definite fatigue. As soon as we get home at the end of the day I eat dinner and go right to bed. It is great being back in my own bed. The days are very long and the commute is tiresome, but I would still rather deal with that than be confined to the hospital for 5 days. Also, the nurses are quite nice and since it is a small facility I see the same nurses daily, and they already know me.
We have a week and a half at home to rest and then we leave again for Houston. We are praying everything is still working as it should be and we will only have to stay there for 4 days. As of right now we do not have internet at home, so I will just continue to post when internet is available and as I am able.
I also wanted to thank everybody back in West Tennessee for all of their hard work in planning and hosting such a successful spaghetti supper in my honor. The turnout was huge and it sounds like it was a great time. I wish we could have been there. I know there are a couple of other benefits in the works and coming up soon and I just want to thank everybody involved, please know how truly appreciated everything is, thank you all again.
Monday August 11, 2008 we met with my new doctor in Georgia, Dr. D’Amato at Emory Crawford Long. She came to Atlanta from Tampa to start up a Sarcoma Department at the hospital. Dr. D’Amato was very informative and very personable, and Marissa and I both really liked her. My chemotherapy was scheduled to start on Monday August 18, 2008.
The rest of the week we spent unpacking, settling back into our house, and getting reacquainted with our dogs. I went to work to visit everyone and catch up on all that had been happening, and Marissa went and watched Jack a couple of days. Saturday we had everyone over to hang out and have pizza before chemo began again, it is so nice being home and having visitors.
Monday August 18, 2008 we left for Emory Crawford Long at 7am. We didn’t get home that night until 7pm, and we were both exhausted. The day was filled with my usual chemo regimen but the staff had to familiarize themselves with my orders and medications. It took a little longer because typically a patient receiving my chemo at this hospital is admitted all week as an inpatient. Since I preferred to remain outpatient the typical little kinks had to be worked out. Marissa and I also had to get used to the way Emory Crawford Long does things-everywhere is different.
Round 4 has not been as bad as Round 3, and I am thankful for that. I have experienced some nausea and definite fatigue. As soon as we get home at the end of the day I eat dinner and go right to bed. It is great being back in my own bed. The days are very long and the commute is tiresome, but I would still rather deal with that than be confined to the hospital for 5 days. Also, the nurses are quite nice and since it is a small facility I see the same nurses daily, and they already know me.
We have a week and a half at home to rest and then we leave again for Houston. We are praying everything is still working as it should be and we will only have to stay there for 4 days. As of right now we do not have internet at home, so I will just continue to post when internet is available and as I am able.
I also wanted to thank everybody back in West Tennessee for all of their hard work in planning and hosting such a successful spaghetti supper in my honor. The turnout was huge and it sounds like it was a great time. I wish we could have been there. I know there are a couple of other benefits in the works and coming up soon and I just want to thank everybody involved, please know how truly appreciated everything is, thank you all again.
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