We have been busy getting ready for this. Wow, we have a bunch of things to do. But before I continue, I want to put our schedule out to ya'all.
Yesterday, we went to do the bone marrow biopsy. We will get the results from that tomorrow morning. His other tests we did came out ok. His pneumonia is gone. He still has his blood clots. He also has an elevated prostrate, which isn't good news. They want him to see an oncologist about it right away. So we are a little worried about it. But will take it a day at a time. If all is well, we will proceed as follows.
Wed. Oct 28, surgery to install a line in Ken for his chemo and blood draws.
Thurs. Oct 29, Chemo all day to start the coaxing of the bone marrow out of Ken's bones.
Fri, Oct 30, more chemo. I will be leaving with the dogs that day to drive my parents car to Phoenix. My friends Terry and Alan are going with me to help drive. I will return on Monday. Ken will be home all weekend, probably with the hiccups and nausea. We have to stay in Denver Thurs night between the chemo, but my Uncle Stan will be going to Denver on Friday to bring Ken home.
Tues, Nov 3rd, we will have a class in Denver in the afternoon.
Wed - Fri, Nov 4-6, Ken will get Neupogen shots. We are hoping a nurse in Ft Collins can come to the house to give it to him.
Fri, Nov 6, we go to Denver to check Ken's levels of white blood cells to see if it is time to harvest. If so, we will start on Sat morning, Nov 7th with the harvest of his bone marrow. The harvest will take anywhere from 2 to 6 days. They will continue every day until they have enough cells.
Then we are done until Sunday, Nov 15th when we will move to Denver. We will be staying at the Staybridge Suites, Denver-Cherry Creek, 4220 E. Virginia Ave, Glendale, CO 80246, 303-321-5757. We will probably stay there until the week of Dec 21st. We will have a one bedroom apartment that is furnished and stocked like a ski lodge. Except it is very clean and sterile. No plants, no nicknacks. Very clean. We will have to cook his meals in the little kitchen. We are going to pretend we are on vacation. Hope we can pull that off.
On Mon, Nov 16th, they will start to give Ken the BEAM High Dose Chemo. He will get that for 6 days. Then on Mon, Nov 23rd, they will give Ken his bone marrow injection. This will be considered day zero. It is sometimes called his new birthday. He will be going to the cancer center for things every day, even on Thanksgiving day. We will go back to the hotel every night. If we can keep Ken healthy and strong, he will be able to recoop outside of the hospital. That is our goal. He will continue to go to the cancer center every day until sometime during the week of Dec 14th. We are hoping that he will be able to come home sometime at the end of that week.
So that is the schedule. Unless his prostrate issue changes it. We'll see. We will try to blog when we can to keep you involved and informed.
Thanks for all your support. At this point, I think I have the paper route covered for Nov and Dec. I might want to cover at least half of it in Jan and Feb. Depends on Ken. I am going to have to keep the house really clean for him. Those that know and love me know that I am not that kind of house keeper. Guess I will have to change. Ken is going to be compromised for quite a while.
We are sending our dogs to Phoenix to stay with my folks. We are wondering if anyone might be traveling there over the holidays or sometime after the first of the year. We are looking for someone to bring them back for us. Otherwise, I'll have to make another trip to get them, probably in Feb after rush is over. So if you have any family coming for the holidays that might help, or know any students going there for the holidays that would return in Jan, let me know. Just throwing it out there. My parents are willing to keep them as long as we need them to, but I know Ken is going to miss them.
Hope this makes sense. Please ask if you have any questions. If you are wondering, I'm sure others will as well. Love to everyone. Bev and Ken.
Thursday, October 22, 2009
Saturday, October 17, 2009
Friday, October 16, 2009
I miss Ken...
I am currently in Greensboro, North Carolina with my brother, Gale and my sister-in-law, Toby. It is early morning, all is quiet and I miss Ken. I woke up and he wasn't there with me. I can't go out to the couch and sit with him till he wakes up and get him to come to bed with me. I can't call him this time of night. I hope he is sleeping well.
Yesterday, Ken went to Denver for his first round of pre-transplant tests. They did an echo cardiogram, a pulmonary function test, a CT scan of his sinus, a chest X-ray to check his pneumonia, BMT Blood labs, an EKG and urine test. He met with the BMT psychologist, Luis Richter and he met again with Vicki Snider, our BMT coordinator. They talked more about what his schedule will be and when we will need to stay in Denver. I wish I'd been there for the meeting with Vicki. But Ken is going to send me the schedule and we are going to a 2 hour class either this Tues or next, so I will catch up on things then. We go to Denver next Wed for Ken's bone marrow biopsy. He needs to have a driver for that test, so I'll take him down. Then we wait for the results and the final schedule.
I hope Ken's pneumonia is gone. He sounds so much better, no coughing. So we expect good results. He feels better too. I think he is ready to do this. I am extremely scared for him, but glad we are "going for the cure" as the doc said. Ken has just been amazing thru all this. When we think back about all that he has gone thru, it doesn't seem fair that he has to go thru more. But it proves that he is strong and able to handle whatever is thrown his way. He will get thru this too. Let's just make a quick list... He has gone thru... the lung leakage, he couldn't breathe for months, that was the worst. His first ever hospital visit of 2 days, then back in 2 days for a 12 day stay. His vocal cord being paralyzed. The blood clot. The 11 rounds of Rituxin in 3 1/2 weeks. All the visits to the ER for a thorosentisis, lung drain. The insertion of a drain in his side so we could drain him at home. The surgery in Denver to fix his lung leak with another 12 day stay. His new diagnosis and the start of the new RCHOP chemo. The HICCUPS. The nausea. Low blood counts and the depression that came with it. All those trips to Denver. The news of another spot and more chemo. The swine flu. Pneumonia. More hiccups. Worrying about his mom and her broken hip, her shingles, her night spent on the floor when she fell and didn't call us. And still he works. Thru all of it, he was in the office when possible and works from home now. Thru all of it, he has kept his sense of humor, his great outlook and his connection with our family and our friends. Sure, he has been sad and sometimes depressed. But not for long, a day or maybe a weekend. Then he is back, ready for the next step. So that is all this Bone Marrow Transplant is. It is another step. Another of a long list of things he will endure and conquer. I love him. He is so strong. I could not have been that strong. He is amazing.
Enough of that. I am supposed to be on vacation. He will be mad at me knowing I was thinking about this. Like I'm not going to think about it. Ha. But I am having a great time. My great-niece, Bella Claire is a doll. She is just 8 weeks old, 8 lbs, 7 1/2 oz. She is a very calm baby and I love holding her. Nothing like holding a sleepy baby. She is starting to smile. Here is a link to Ben and Mary's blog about Bella. There is a video Mary just put up of Bella. It is adorable, especially the last few seconds. LOL Check it out if you have time. http://www.thebrownfamilyof3.blogspot.com/
I enjoyed the day with Toby yesterday. We went shopping, went out to lunch, had the kids over for dinner and enjoyed the day. Today, we are headed to the beach and the oyster festival. Of course, it is rainy and cold here, but I don't care. I am going to get to see the ocean. I miss seeing the waves. Can't wait. I might even get brave enough to try an oyster. Though after watching survivor last night and seeing all the slug they were eating, I might loose me nerve. Ken is the strong one. I might just have to stick to shrimp. We'll see. Love you all. Especially you, Ken. I miss you and ISBLU. Bev (That's I'll Still Be Loving You, our song, for those that were wondering.)
Yesterday, Ken went to Denver for his first round of pre-transplant tests. They did an echo cardiogram, a pulmonary function test, a CT scan of his sinus, a chest X-ray to check his pneumonia, BMT Blood labs, an EKG and urine test. He met with the BMT psychologist, Luis Richter and he met again with Vicki Snider, our BMT coordinator. They talked more about what his schedule will be and when we will need to stay in Denver. I wish I'd been there for the meeting with Vicki. But Ken is going to send me the schedule and we are going to a 2 hour class either this Tues or next, so I will catch up on things then. We go to Denver next Wed for Ken's bone marrow biopsy. He needs to have a driver for that test, so I'll take him down. Then we wait for the results and the final schedule.
I hope Ken's pneumonia is gone. He sounds so much better, no coughing. So we expect good results. He feels better too. I think he is ready to do this. I am extremely scared for him, but glad we are "going for the cure" as the doc said. Ken has just been amazing thru all this. When we think back about all that he has gone thru, it doesn't seem fair that he has to go thru more. But it proves that he is strong and able to handle whatever is thrown his way. He will get thru this too. Let's just make a quick list... He has gone thru... the lung leakage, he couldn't breathe for months, that was the worst. His first ever hospital visit of 2 days, then back in 2 days for a 12 day stay. His vocal cord being paralyzed. The blood clot. The 11 rounds of Rituxin in 3 1/2 weeks. All the visits to the ER for a thorosentisis, lung drain. The insertion of a drain in his side so we could drain him at home. The surgery in Denver to fix his lung leak with another 12 day stay. His new diagnosis and the start of the new RCHOP chemo. The HICCUPS. The nausea. Low blood counts and the depression that came with it. All those trips to Denver. The news of another spot and more chemo. The swine flu. Pneumonia. More hiccups. Worrying about his mom and her broken hip, her shingles, her night spent on the floor when she fell and didn't call us. And still he works. Thru all of it, he was in the office when possible and works from home now. Thru all of it, he has kept his sense of humor, his great outlook and his connection with our family and our friends. Sure, he has been sad and sometimes depressed. But not for long, a day or maybe a weekend. Then he is back, ready for the next step. So that is all this Bone Marrow Transplant is. It is another step. Another of a long list of things he will endure and conquer. I love him. He is so strong. I could not have been that strong. He is amazing.
Enough of that. I am supposed to be on vacation. He will be mad at me knowing I was thinking about this. Like I'm not going to think about it. Ha. But I am having a great time. My great-niece, Bella Claire is a doll. She is just 8 weeks old, 8 lbs, 7 1/2 oz. She is a very calm baby and I love holding her. Nothing like holding a sleepy baby. She is starting to smile. Here is a link to Ben and Mary's blog about Bella. There is a video Mary just put up of Bella. It is adorable, especially the last few seconds. LOL Check it out if you have time. http://www.thebrownfamilyof3.blogspot.com/
I enjoyed the day with Toby yesterday. We went shopping, went out to lunch, had the kids over for dinner and enjoyed the day. Today, we are headed to the beach and the oyster festival. Of course, it is rainy and cold here, but I don't care. I am going to get to see the ocean. I miss seeing the waves. Can't wait. I might even get brave enough to try an oyster. Though after watching survivor last night and seeing all the slug they were eating, I might loose me nerve. Ken is the strong one. I might just have to stick to shrimp. We'll see. Love you all. Especially you, Ken. I miss you and ISBLU. Bev (That's I'll Still Be Loving You, our song, for those that were wondering.)
Tuesday, October 13, 2009
Meeting the new doctor
Today was an informative day. Bev and I went to Presbyterian/St. Luke's to the Rocky Mountain Cancer Center in Denver. We met my new doctor, Jeff Matous. He spent a fair amount of time questioning me and looking over the file that Dr. Myint had sent him. He was in essence giving us a second opinion as to whether to proceed with a transplant. He gave us a brief synopsis of lymphoma as follows:
There are two kinds of Non Hodgkin's lymphoma. Tcell or Bcell. There are a few dozen kinds of Bcell, the most common being DLBCL - diffuse large Bcell NHL. Second most common is FCC - follicular center cell NHL. DLBCL can arise on its' own or develop from a previous follicular which is called "transformed". This is what has happened to me. In many patients, they see both follicular and diffuse large Bcell. Ft. Collins thought originally that I had follicular and gave me rituxen, because follicular is less aggressive. He said that with follicular, they follow the patient, that it is not curable but highly treatable, and that they manage it through life. More aggressive is both follicular large cell and DLBCL. They treat this with RCHOP which is the 8 rounds of chemo that I had. They treat this with curative intent, the goal being complete remission of DCBCL.
After RCHOP, if I was clear, they would monitor and if relapse occurred they would do high dose chemo and autologous stem cell transplant. Since my PET scan was still abnormal, he doesn't know if what remains is follicular or large Bcell. Surgery is out due to location of tumor and he said that some might remain in other locations. So what's next?
If there was a fair amount of NHL left they would do a 2ND round of chemo using "RICE" then go to the transplant. Luckily I have minimal NHL left so he thinks we should go straight to transplant. We asked the difference between bone marrow and stem cell transplant. He said that the stem cells most of the time reside in the bone marrow so they interchange the words often. In my case, I can donate my own stem cells out of my bone marrow instead of having to get a donor. This is a safer and somewhat easier procedure than using a donor.
So our typical next steps are:
1. Pre-transplant testing. They will test my heart, lungs, kidneys and all other organs to make sure I will be able to withstand the upcoming treatment. This testing will start this Thursday. They will also do a bone marrow biopsy. If all goes well, I will proceed to step two.
2. Collecting cells. To get the stem cells to come out of the bone marrow, they will give me 2 days of chemo with cytoxen and UP-16, followed by a neulasta shot. This will kill more cells but bring out the stem cells out of the marrow to help boost my immune system. 17 days later they will collect these stem cells by hooking me up to a machine that separates the blood into platelets, stem cells, and other items. They will harvest the stem cells, test them for cleanliness, then freeze them.
3. High dose Chemotherapy. I will receive 4 drugs they call "BEAM" for 6 days in a row. The coordinator said the B drug with make me act drunk and even nauseous and have a headache the next day like a hangover. The E and A will not have much side effects but then the M will make me nauseous in a few days afterward. Then they will wait for two days and start infusing my stem cells into my blood stream. I will have zero white blood count which is the most dangerous part because I would not be able to fight any infection. As the stem cells take hold, my white blood counts will go up. They call the day I receive the stem cells, day zero. It will become my second birthday. All days afterward will be based on day zero.
The best thing I found out is that all of this can be done as out patient instead of being in the hospital. That made me very happy. Jeff, as he wants to be called, said he has done this for 19 years as outpatient, about 200 procedures a year. Of course if something were to go wrong or I developed an infection, then they would hospitalize me. They said that might happen in about 25% of the cases. As long as I follow the plan and procedures, I should be okay. Jeff has four other partners all of who trained in Seattle where transplants were first done. I feel confident in his knowledge and he was very personable.
Because we live 58 miles from the hospital, insurance will assist with a per Diem amount to cover food, lodging and travel. Their cutoff was 50 miles, so we lucked out. Besides the initial testing of my body parts, we are now trying to plan with the insurance company where we might stay. Also, we have contacted work as to qualifying for short term disability as I will be out for 60 or more days. Vicki the coordinator is going to send us a tentative schedule but we have not received that yet. But the rough plan is to have the preliminary work done and start the high dose chemo Thanksgiving week. If all goes well I might be able to come home around December 21. Just in time for Christmas, which is my Christmas wish, to be alive and home this Christmas.
We will keep you updated as to the schedule once it becomes more clear. Thank you so very much for all of your support. God Bless You!
There are two kinds of Non Hodgkin's lymphoma. Tcell or Bcell. There are a few dozen kinds of Bcell, the most common being DLBCL - diffuse large Bcell NHL. Second most common is FCC - follicular center cell NHL. DLBCL can arise on its' own or develop from a previous follicular which is called "transformed". This is what has happened to me. In many patients, they see both follicular and diffuse large Bcell. Ft. Collins thought originally that I had follicular and gave me rituxen, because follicular is less aggressive. He said that with follicular, they follow the patient, that it is not curable but highly treatable, and that they manage it through life. More aggressive is both follicular large cell and DLBCL. They treat this with RCHOP which is the 8 rounds of chemo that I had. They treat this with curative intent, the goal being complete remission of DCBCL.
After RCHOP, if I was clear, they would monitor and if relapse occurred they would do high dose chemo and autologous stem cell transplant. Since my PET scan was still abnormal, he doesn't know if what remains is follicular or large Bcell. Surgery is out due to location of tumor and he said that some might remain in other locations. So what's next?
If there was a fair amount of NHL left they would do a 2ND round of chemo using "RICE" then go to the transplant. Luckily I have minimal NHL left so he thinks we should go straight to transplant. We asked the difference between bone marrow and stem cell transplant. He said that the stem cells most of the time reside in the bone marrow so they interchange the words often. In my case, I can donate my own stem cells out of my bone marrow instead of having to get a donor. This is a safer and somewhat easier procedure than using a donor.
So our typical next steps are:
1. Pre-transplant testing. They will test my heart, lungs, kidneys and all other organs to make sure I will be able to withstand the upcoming treatment. This testing will start this Thursday. They will also do a bone marrow biopsy. If all goes well, I will proceed to step two.
2. Collecting cells. To get the stem cells to come out of the bone marrow, they will give me 2 days of chemo with cytoxen and UP-16, followed by a neulasta shot. This will kill more cells but bring out the stem cells out of the marrow to help boost my immune system. 17 days later they will collect these stem cells by hooking me up to a machine that separates the blood into platelets, stem cells, and other items. They will harvest the stem cells, test them for cleanliness, then freeze them.
3. High dose Chemotherapy. I will receive 4 drugs they call "BEAM" for 6 days in a row. The coordinator said the B drug with make me act drunk and even nauseous and have a headache the next day like a hangover. The E and A will not have much side effects but then the M will make me nauseous in a few days afterward. Then they will wait for two days and start infusing my stem cells into my blood stream. I will have zero white blood count which is the most dangerous part because I would not be able to fight any infection. As the stem cells take hold, my white blood counts will go up. They call the day I receive the stem cells, day zero. It will become my second birthday. All days afterward will be based on day zero.
The best thing I found out is that all of this can be done as out patient instead of being in the hospital. That made me very happy. Jeff, as he wants to be called, said he has done this for 19 years as outpatient, about 200 procedures a year. Of course if something were to go wrong or I developed an infection, then they would hospitalize me. They said that might happen in about 25% of the cases. As long as I follow the plan and procedures, I should be okay. Jeff has four other partners all of who trained in Seattle where transplants were first done. I feel confident in his knowledge and he was very personable.
Because we live 58 miles from the hospital, insurance will assist with a per Diem amount to cover food, lodging and travel. Their cutoff was 50 miles, so we lucked out. Besides the initial testing of my body parts, we are now trying to plan with the insurance company where we might stay. Also, we have contacted work as to qualifying for short term disability as I will be out for 60 or more days. Vicki the coordinator is going to send us a tentative schedule but we have not received that yet. But the rough plan is to have the preliminary work done and start the high dose chemo Thanksgiving week. If all goes well I might be able to come home around December 21. Just in time for Christmas, which is my Christmas wish, to be alive and home this Christmas.
We will keep you updated as to the schedule once it becomes more clear. Thank you so very much for all of your support. God Bless You!
Friday, October 9, 2009
Change is inevitable
I would like to send condolences to our good friend Carol Ann who lost her mother this past weekend. Bev and I were able to attend her service on Wednesday in Windsor and it was a very nice service.
The only thing guaranteed in life is change. In a previous post, Bev had laid out the time frame as to what we were looking at for the upcoming stem cell transplant procedure. By Wednesday of this week, we had found out that Dr. Myint and the University of Colorado hospital are not covered by our insurance to do the transplant procedure. We have instead been referred to Presbyterian/ St. Luke's hospital and the head of their oncology department. This is the only hospital approved by Great West insurance to do stem cell transplants in the entire state. They told us that PSL had the greatest success rate for this type of transplant. That was good news for me as I would like the greatest chance to survive. They also said U of C hospital and Dr. Myint were good but did not have a long enough track record with Dr. Myint as he had only been there for three years.
So we have contacted PSL and the new doctor and have an appointment with him next Tuesday to see where we go from here. Bev and I were concerned that this change will totally change our schedule, and I might not be done by Christmas. Luckily, the doctor's assistant told us on the telephone that since I have already done my 8 rounds of chemo that the doctor would want to proceed as soon as possible. So now we wait for Tuesday, to meet the new doctor, to find out the schedule, and to take a tour of the hospital.
Linda and Don Kaufman, Mark's parents, have graciously said we could use their condo in Denver while waiting for after treatment once I am out of the hospital. We are assuming the protocols are similar to U of C hospital concerning the procedure and all of the things we need to do to get ready. One of those was to go to the dentist to make sure everything was good and I have no infections. Of course when I went I had a small cavity they had to fill, but the xrays also showed I might have a old infection from a previous root canal. So they sent me to a specialist who did a consultation and now has an appointment for me Monday to work on it. I need to have all work done before I could go into the hospital for the transplant so that there is no chance for any infection. My body would not be able to fight any once the procedure starts. I was also able to meet with my boss and his team and explain my situation. They have been so supportive and understanding, I can't thank them enough. Wednesday evening I was able to meet with my student managers for the first time in weeks. I was able to tell them in my own terms what is coming up and to thank them for doing such a great job while I have been out.
I am starting to feel much better. I think my pneumonia is almost gone, my hiccups have stopped, and most of all the depression I felt last weekend after hearing the news of the transplant has subsided and I am feeling more hope for a successful outcome. I think my outlook has changed due to all of the support I have received from family, friends and neighbors. Of course the news about the new hospital and doctor is a big change. When Bev told me about the change of plans to a different hospital, the only thing I could think of at the moment was "Well, they might have better food!".
Change is inevitable in life. Just when you think you are comfortable, something changes. You have a baby, you might lose your loved one, your job might change, you might move, you might be diagnosed with Lymphoma. I feel so lucky to be alive. I have a sign on our fireplace made by Madison, Kaley and their mom, Stephanie, that says in big letters, Get Well Soon!. I look at that everyday and that is my goal. I have a long road ahead but with God's help, and your support, I hope to be well someday. I am a survivor, and so are you for reading this. God bless you!
The only thing guaranteed in life is change. In a previous post, Bev had laid out the time frame as to what we were looking at for the upcoming stem cell transplant procedure. By Wednesday of this week, we had found out that Dr. Myint and the University of Colorado hospital are not covered by our insurance to do the transplant procedure. We have instead been referred to Presbyterian/ St. Luke's hospital and the head of their oncology department. This is the only hospital approved by Great West insurance to do stem cell transplants in the entire state. They told us that PSL had the greatest success rate for this type of transplant. That was good news for me as I would like the greatest chance to survive. They also said U of C hospital and Dr. Myint were good but did not have a long enough track record with Dr. Myint as he had only been there for three years.
So we have contacted PSL and the new doctor and have an appointment with him next Tuesday to see where we go from here. Bev and I were concerned that this change will totally change our schedule, and I might not be done by Christmas. Luckily, the doctor's assistant told us on the telephone that since I have already done my 8 rounds of chemo that the doctor would want to proceed as soon as possible. So now we wait for Tuesday, to meet the new doctor, to find out the schedule, and to take a tour of the hospital.
Linda and Don Kaufman, Mark's parents, have graciously said we could use their condo in Denver while waiting for after treatment once I am out of the hospital. We are assuming the protocols are similar to U of C hospital concerning the procedure and all of the things we need to do to get ready. One of those was to go to the dentist to make sure everything was good and I have no infections. Of course when I went I had a small cavity they had to fill, but the xrays also showed I might have a old infection from a previous root canal. So they sent me to a specialist who did a consultation and now has an appointment for me Monday to work on it. I need to have all work done before I could go into the hospital for the transplant so that there is no chance for any infection. My body would not be able to fight any once the procedure starts. I was also able to meet with my boss and his team and explain my situation. They have been so supportive and understanding, I can't thank them enough. Wednesday evening I was able to meet with my student managers for the first time in weeks. I was able to tell them in my own terms what is coming up and to thank them for doing such a great job while I have been out.
I am starting to feel much better. I think my pneumonia is almost gone, my hiccups have stopped, and most of all the depression I felt last weekend after hearing the news of the transplant has subsided and I am feeling more hope for a successful outcome. I think my outlook has changed due to all of the support I have received from family, friends and neighbors. Of course the news about the new hospital and doctor is a big change. When Bev told me about the change of plans to a different hospital, the only thing I could think of at the moment was "Well, they might have better food!".
Change is inevitable in life. Just when you think you are comfortable, something changes. You have a baby, you might lose your loved one, your job might change, you might move, you might be diagnosed with Lymphoma. I feel so lucky to be alive. I have a sign on our fireplace made by Madison, Kaley and their mom, Stephanie, that says in big letters, Get Well Soon!. I look at that everyday and that is my goal. I have a long road ahead but with God's help, and your support, I hope to be well someday. I am a survivor, and so are you for reading this. God bless you!
Thursday, October 1, 2009
Results are in...
This is Bev. We are taking it well, but results are in. Ken has to have the bone marrow transplant. He luckily gets to give himself the bone marrow, so that is the safest way. Here is what happened today. I hope you have read the previous blog. That will explain what happened this morning. Then we went for lunch to the Spaghetti Factory, Ken's favorite place to eat in Denver. They sat us in the white iron bed with purple cushions. Our favorite booth. We remember eating in that booth with all the kids a few times when they were little. We sure wouldn't all fit in that booth now. It was a nice lunch. Then it was back to the hospital.
As we checked in at the desk for his doctor's appointment this afternoon, they handed us both a psychological questionnaire. They were for the bone marrow transplant patient and the transplant care giver. Here was another sign even before we got the news. Then when we went back to the room to wait for the doc, Jana came in to interview us. She talked for about 30-45 minutes. She was a psychologist. She needed to check us out for our sanity to see if we can get thru all this. They need to give a psychological report to the insurance company. She gave us more information about what to expect. Then the doc finally came in.
Dr. Myint came in and said that the scan showed that Ken still had the one spot that he had 6 weeks ago. It is stubborn and just won't go away. So the transplant is the ticket. It will take care of it. Doc says we need to keep going while we are winning. So, we will keep going. We don't know everything yet, but we will be meeting with our coordinator soon and will get the rest of our questions answered. This is what we do know for now.
Oct. 15th, Ken will go down for x-rays to see if his pneumonia is cured. He has to be careful in the next few weeks that he is able to heal and get over it.
Oct. 19th, he will go into the hospital for 3 days. They will give him a different kind of chemo and shots every day that will boost his immune system and make the right kind of white blood cells.
The week of Nov. 2nd, he will go to Denver for a 1 day outpatient procedure to harvest his white blood cells. They will then check them and keep them.
On Nov. 9th, he will go into the hospital for his transplant. He will be in for about 3 or 4 weeks.
Then when he is released, he will need to stay in Denver for 2-3 weeks. They say they tell people they may have to stay close up to 3 months, but since we live sort of close anyway, we will probably only need to stay for 2-3 weeks. He has to have someone with him 24/7, so I will have to stay there with him. He will have to be within a 30 minute drive of the hospital. They say that if his fever spikes at all, he needs to be close. And his platelets are compromised during this procedure, so they worry about bleeding. That is the main reason he has to stay close.
So that is what we know for now. There are lots of things to figure out before Ken goes in the hospital. I know we will need help with Ken's mom. I'll need to figure out the paper route. Who's going to watch the dogs. Should I get away for a few days to see my brother and family before all this starts. Yes, psychologist says to go now. When will I get my flu shot, H1N1 shot, my yearly physical. I'm calling the doctor tomorrow to start all that. So, we will be figuring all this out within the next few weeks. We don't have to decide it all today. I am so looking forward to the weekend. We need to relax and let this all soak in. Thanks for being there for us. We love every soul that is reading this and caring about us. Bless You all. Bev
As we checked in at the desk for his doctor's appointment this afternoon, they handed us both a psychological questionnaire. They were for the bone marrow transplant patient and the transplant care giver. Here was another sign even before we got the news. Then when we went back to the room to wait for the doc, Jana came in to interview us. She talked for about 30-45 minutes. She was a psychologist. She needed to check us out for our sanity to see if we can get thru all this. They need to give a psychological report to the insurance company. She gave us more information about what to expect. Then the doc finally came in.
Dr. Myint came in and said that the scan showed that Ken still had the one spot that he had 6 weeks ago. It is stubborn and just won't go away. So the transplant is the ticket. It will take care of it. Doc says we need to keep going while we are winning. So, we will keep going. We don't know everything yet, but we will be meeting with our coordinator soon and will get the rest of our questions answered. This is what we do know for now.
Oct. 15th, Ken will go down for x-rays to see if his pneumonia is cured. He has to be careful in the next few weeks that he is able to heal and get over it.
Oct. 19th, he will go into the hospital for 3 days. They will give him a different kind of chemo and shots every day that will boost his immune system and make the right kind of white blood cells.
The week of Nov. 2nd, he will go to Denver for a 1 day outpatient procedure to harvest his white blood cells. They will then check them and keep them.
On Nov. 9th, he will go into the hospital for his transplant. He will be in for about 3 or 4 weeks.
Then when he is released, he will need to stay in Denver for 2-3 weeks. They say they tell people they may have to stay close up to 3 months, but since we live sort of close anyway, we will probably only need to stay for 2-3 weeks. He has to have someone with him 24/7, so I will have to stay there with him. He will have to be within a 30 minute drive of the hospital. They say that if his fever spikes at all, he needs to be close. And his platelets are compromised during this procedure, so they worry about bleeding. That is the main reason he has to stay close.
So that is what we know for now. There are lots of things to figure out before Ken goes in the hospital. I know we will need help with Ken's mom. I'll need to figure out the paper route. Who's going to watch the dogs. Should I get away for a few days to see my brother and family before all this starts. Yes, psychologist says to go now. When will I get my flu shot, H1N1 shot, my yearly physical. I'm calling the doctor tomorrow to start all that. So, we will be figuring all this out within the next few weeks. We don't have to decide it all today. I am so looking forward to the weekend. We need to relax and let this all soak in. Thanks for being there for us. We love every soul that is reading this and caring about us. Bless You all. Bev
We wait...
Ken is in radiology at UCH preparing for his pet scan. Takes a couple of hours for him to drink all the stuff that lights him up inside and for the scan. Then we wait until 2:40 to meet with Dr. Myint and hear the news. We have been praying for his cancer to be gone, for the good news. But...
I recall, on March 2nd when Ken was first laying in the ER at PVH and the doctor just mentioned the possibility of lymphoma in passing. Ken and I just looked at each other and said, "Isn't that cancer". We knew very little about it. And we had to wait until Thursday for the confirmation of the biopsy. But in those days in between, we had been told by nurses and doctors that it looks like lymphoma. The chyle that they drained from Ken's lung cavity was a symptom, all the large lymph nodes in the cat scan were an indicator. The oncologist that was assigned to us on Tuesday morning, was kind of a clue. By the time Thursday came around, we already knew and were expecting the news. Still, it is tough to get that confirmation.
This last week as Ken was in the hospital, a charge nurse comes in and tells Ken about his pneumonia and his blood clots. She mentions that Dr. Myint will be in to tell him about his abnormal lymph nodes that showed up in the cat scan. What! What was that about lymph nodes? We waited till the next morning to see Dr. Myint and get the news that the cat scan shows large lymph nodes again. Dr. Myint wants to see the pet scan first, but expects to need to do a bone marrow transplant. What! This isn't what we were expecting. He explains that since Ken's lymphoma was follicular on March 1st, but the third kind of follicular, the bad boy kind. Then in 1 month, it changed to Diffuse, large B cell lymphoma. Then after 6 treatments, he still had a spot of cancer. And now it shows more abnormalities. He thinks Ken has a very aggressive cancer and Dr. Myint says he needs the transplant. (But we wait for the pet scan to be sure.) Ok, we will wait. But in the mean time, while he is in the hospital, the nurses start telling us about the rooms on the other side, the transplant side. They tell us about expectations over there. They tell us about schedules and visitation. Then a case worker, Amy Malcom, comes in and tells us about financing and about housing. We may be staying in Denver for a few weeks after the transplant so we can be close to the hospital for Ken's daily out-patient checkups. This is after his 3 weeks in the hospital. What? Ken won't be done in 3 weeks? Maybe not in 6 weeks? The case worker tells us the name of the nurse coordinator that has been assigned to Ken for his transplant process. Her name is Kelly Pacic. Wait... shouldn't we wait till we get the confirmation? Then they give us an early release from the hospital so Ken can get his pet scan today instead of waiting till next week. Ok, let's get it over with. Ken says we already know what to expect, so this is just a stupid formality. I don't know if being this prepared is a good thing or not. We will be ready to hear the news and to find out what is next, but dang. Where is the hope that the scan will be clean. What happened to that wish. We are hanging on to a thread. But it is just a thread. I think we both know what is coming. And so we wait...
I recall, on March 2nd when Ken was first laying in the ER at PVH and the doctor just mentioned the possibility of lymphoma in passing. Ken and I just looked at each other and said, "Isn't that cancer". We knew very little about it. And we had to wait until Thursday for the confirmation of the biopsy. But in those days in between, we had been told by nurses and doctors that it looks like lymphoma. The chyle that they drained from Ken's lung cavity was a symptom, all the large lymph nodes in the cat scan were an indicator. The oncologist that was assigned to us on Tuesday morning, was kind of a clue. By the time Thursday came around, we already knew and were expecting the news. Still, it is tough to get that confirmation.
This last week as Ken was in the hospital, a charge nurse comes in and tells Ken about his pneumonia and his blood clots. She mentions that Dr. Myint will be in to tell him about his abnormal lymph nodes that showed up in the cat scan. What! What was that about lymph nodes? We waited till the next morning to see Dr. Myint and get the news that the cat scan shows large lymph nodes again. Dr. Myint wants to see the pet scan first, but expects to need to do a bone marrow transplant. What! This isn't what we were expecting. He explains that since Ken's lymphoma was follicular on March 1st, but the third kind of follicular, the bad boy kind. Then in 1 month, it changed to Diffuse, large B cell lymphoma. Then after 6 treatments, he still had a spot of cancer. And now it shows more abnormalities. He thinks Ken has a very aggressive cancer and Dr. Myint says he needs the transplant. (But we wait for the pet scan to be sure.) Ok, we will wait. But in the mean time, while he is in the hospital, the nurses start telling us about the rooms on the other side, the transplant side. They tell us about expectations over there. They tell us about schedules and visitation. Then a case worker, Amy Malcom, comes in and tells us about financing and about housing. We may be staying in Denver for a few weeks after the transplant so we can be close to the hospital for Ken's daily out-patient checkups. This is after his 3 weeks in the hospital. What? Ken won't be done in 3 weeks? Maybe not in 6 weeks? The case worker tells us the name of the nurse coordinator that has been assigned to Ken for his transplant process. Her name is Kelly Pacic. Wait... shouldn't we wait till we get the confirmation? Then they give us an early release from the hospital so Ken can get his pet scan today instead of waiting till next week. Ok, let's get it over with. Ken says we already know what to expect, so this is just a stupid formality. I don't know if being this prepared is a good thing or not. We will be ready to hear the news and to find out what is next, but dang. Where is the hope that the scan will be clean. What happened to that wish. We are hanging on to a thread. But it is just a thread. I think we both know what is coming. And so we wait...
Big, Big Day - Happy to be home
Today, Thursday, October 1st, is a big, big day for us. On a whirl wind, surprise, the doc let Ken out of the hospital yesterday. We thought he would be there a few more days, but at the last minute, the doc decided to let Ken come home. Seems the insurance wouldn't let Ken keep his appointment for today to have his pet scan if he was still in-patient. He needed to be considered out-patient to keep the appointment. So, we came home at 7:00 last night, only to travel back to Denver this morning at 9:00 for his pet scan. We are happy to be home.
We are giving Ken shots for his blood clots again, for another 3 months. He has medicine for his pneumonia and hope to have that healed within the next 2 weeks. Ken actually feels ok. He has a small cough, but no fever, no chest pains, no other symptoms. He is moving slow, but feels pretty good.
Today is the pet scan, today is the doctor's appointment at 2:30 with Dr. Myint, today is the day we find out about the cancer progression. At this appointment, we will hear the results and find out if Ken really needs a bone marrow transplant. We hope to have answers today. Keep us in your thoughts today. We will blog as soon as we can with the news.
We are giving Ken shots for his blood clots again, for another 3 months. He has medicine for his pneumonia and hope to have that healed within the next 2 weeks. Ken actually feels ok. He has a small cough, but no fever, no chest pains, no other symptoms. He is moving slow, but feels pretty good.
Today is the pet scan, today is the doctor's appointment at 2:30 with Dr. Myint, today is the day we find out about the cancer progression. At this appointment, we will hear the results and find out if Ken really needs a bone marrow transplant. We hope to have answers today. Keep us in your thoughts today. We will blog as soon as we can with the news.
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