Today is a beautiful day in Denver that God has given us. Today is day zero minus 5 meaning five more days until day zero when I will receive my stem cells. I feel remarkably well. I am eating good. My doctor I have been seeing is Dr. McSweeney for the past three days. He said I am doing good so far.
The nutritionist Elizabeth said that what is "normal" is that I will probably feel good between now and day zero plus five, so about ten more days. This is not what I was expecting. I had assumed once I started high dose BEAM that I would be feeling nauseous and vomiting like I had when I would go through the RCHOP regimen. Elizabeth said that will probably start around zero plus five. The doc said that is when I could develop mouth sores, which they talk about a lot. Also, blood transfusions, platelet transfusions, spiking temperatures etc. are all on the horizon. Things I knew were coming but thought they would be here now. I am so glad I am doing this as outpatient at this time. I can't imagine feeling this good and being cooped up in a hospital room for 24/7.
The chemo I am now getting is called Etoposide (VP-16). Side effects are:
Nausea and vomiting
Hypersensitvity/Anaphylatic reaction - an allergic reaction that may cause itching, hives, swelling, difficulty breathing, sudden decrease in blood pressure resulting in fever and chills
Pancytopenia - a decrease in red and white blood cells and platelets which will require protection from bleeding and infection
Mucositis/Esophagitis - Inflammation and destruction of the cell lining along the mouth, throat and stomach - may cause bleeding pain and diarrhea
Alopecia - loss of hair several weeks after chemo (too bad because mine was just starting to grow back in LOL!)
Reproductive dysfunction - sterility
Peripheral neuropathies - numbness and or tingling in hands and feet
Rediation recall - won't affect me as I have not had to have any radiation
Hyperpigmentation - darkening of the skin tone
Veno-0cclusive disease - injury to the liver accompanied by an elevated bilirubin level; may result in weight gain, right side abdominal discomfort, enlarged liver, yellowing of the eyes and skin - usually happens between days +7 and +28 of my protocol if it occurs
The veno-occlusive disease sounds a little scary. As the doc says the worst is yet to come, but hopefully not all of this happens to everyone. I am hoping for the best.
All I would like to say is enjoy your day, love your family and friends, thank God for our good fortune to be alive. Thank you for your support!
Wednesday, November 18, 2009
Monday, November 16, 2009
I'm on fire
Today started slow and with a little anxiety that Bev mentions previously. Once they decide to proceed it started off slow with a saline drip. Then I received BCNU (carmustine). This is a drug given to destroy cancer cells. Mary my nurse gave me a sheet and explained the side effects of BCNU. They are:
Nausea and vomiting - self explanatory
Hypotension - may cause a decrease in blood pressure which can lead to dizziness and passing out
Pancytopenia - a possible prolonged decrease in white and red cells and platelets which will require protection from infection
Muscosistis/Esophagitis - inflammation and destruction of the cell lining along the mouth, throat and stomach, may cause bleeding pain and diarrhea
Alopecia - partial or complete loss of body hair several weeks after therapy
Hyperpigmentation - darkening of the skin tone, a tan appearance
Pulmonary toxicity - thickening of the lung tissue which may occur up to several years later
Ocular toxicity - visual changes which may begin as seeing spots
Liver dysfunction - reversible injury to the liver which may cause jaundice of skin and eyes and rarely coma
Reproductive dysfunction - may cause sterility (thank God I have wonderful kids)
Secondary Malignancy - acute leukemia may also occur (the scariest of all side effects)
Knowing these, I am at the point of no return. This was literally the last moment I could back out of the entire transplant process. Once I begin my counts will go down so low that the doctors will make me continue. I have come this far. So I begin. All goes well during the first two hours. I have lunch of mac and cheese. Then several more hours and all of a sudden my mouth starts burning. My lips tingle as if they are burned from the hottest peppers I have ever eaten. The inside of my mouth is hot and won't stop burning. I start to sweat on the top of my head, yet begin to have have chills from my chest down. My blood pressure is dropping fast enough that Mary now calls in more help. She starts taking my blood pressure every few minutes. It is low at 80 over 50. Bev puts multiple blankets on me for the chills, a wet cloth on my head. I can't bear to open my eyes but I can hear what is going on. Mary says I am almost done but changes the flow of the BCNU. My blood pressure is becoming stable at least. They stop the BCNU and fill me with fluids which is causing the chills. I can't drink because my mouth hurts so bad, but then that finally starts to go away. I lose track of what is going on around me and fall asleep. Bev says the nurses keep tracking me and Mary stays with me until all is normal again. She starts the BCNU again and it finally finishes. I thanked her for staying with me when I woke back up an hour later. I took multiple nausea medicines and now I feel fine. I'm not even hurting in my chest very much like I was over the weekend.
We stopped at King Soopers to get some groceries then came "home". We had lasagna. I'm still hungry. A good sign. No signs of the hangover effect they told me I would have, just the munchies LOL! Day -7 is just about over.
God bless each one of you who read this and for your support!
Nausea and vomiting - self explanatory
Hypotension - may cause a decrease in blood pressure which can lead to dizziness and passing out
Pancytopenia - a possible prolonged decrease in white and red cells and platelets which will require protection from infection
Muscosistis/Esophagitis - inflammation and destruction of the cell lining along the mouth, throat and stomach, may cause bleeding pain and diarrhea
Alopecia - partial or complete loss of body hair several weeks after therapy
Hyperpigmentation - darkening of the skin tone, a tan appearance
Pulmonary toxicity - thickening of the lung tissue which may occur up to several years later
Ocular toxicity - visual changes which may begin as seeing spots
Liver dysfunction - reversible injury to the liver which may cause jaundice of skin and eyes and rarely coma
Reproductive dysfunction - may cause sterility (thank God I have wonderful kids)
Secondary Malignancy - acute leukemia may also occur (the scariest of all side effects)
Knowing these, I am at the point of no return. This was literally the last moment I could back out of the entire transplant process. Once I begin my counts will go down so low that the doctors will make me continue. I have come this far. So I begin. All goes well during the first two hours. I have lunch of mac and cheese. Then several more hours and all of a sudden my mouth starts burning. My lips tingle as if they are burned from the hottest peppers I have ever eaten. The inside of my mouth is hot and won't stop burning. I start to sweat on the top of my head, yet begin to have have chills from my chest down. My blood pressure is dropping fast enough that Mary now calls in more help. She starts taking my blood pressure every few minutes. It is low at 80 over 50. Bev puts multiple blankets on me for the chills, a wet cloth on my head. I can't bear to open my eyes but I can hear what is going on. Mary says I am almost done but changes the flow of the BCNU. My blood pressure is becoming stable at least. They stop the BCNU and fill me with fluids which is causing the chills. I can't drink because my mouth hurts so bad, but then that finally starts to go away. I lose track of what is going on around me and fall asleep. Bev says the nurses keep tracking me and Mary stays with me until all is normal again. She starts the BCNU again and it finally finishes. I thanked her for staying with me when I woke back up an hour later. I took multiple nausea medicines and now I feel fine. I'm not even hurting in my chest very much like I was over the weekend.
We stopped at King Soopers to get some groceries then came "home". We had lasagna. I'm still hungry. A good sign. No signs of the hangover effect they told me I would have, just the munchies LOL! Day -7 is just about over.
God bless each one of you who read this and for your support!
Day -7
We are at the Rocky Mountain Cancer Center and they have finally started Ken's procedures. We got here at 7:30 this morning, they drew blood and then spent 2 hours talking to doctors here and calling doctors in MCR. They at first weren't going to start Ken today since he had been in the hospital. But the green light came thru for us and they decided to start. Ken is sleeping now while they do a 2 hour saline solution drip. The nurse is suppose to come back in an hour or so and train us more on what to expect, but she gave us a preview. After his 2 hour saline/potassium drip, they will start the chemo for another 2 hour drip. She said that one simulates drinking alcohol. Kind of like going to the bar and having 3 margaritas or martinis. She said it may or may not affect you. Some people experience the hangover without the fun. He may be light headed and dizzy. Since Ken is a lightweight drinker, I bet he is wobbly as well. This could be interesting. We are just glad that they didn't have to delay. We are ready to get this over with.
Yesterday was an exhausting day for both of us. After getting Ken home from the hospital, I continued to pack and get things ready. At 5:00, I realized I couldn't finish alone, so I called in a few friends to help. Thank you to Stephanie Kemp and Terry Williamson. You were live savers. They helped load the car, finish packing and move all the furniture around so the carpet cleaner can come in. I felt great about getting it all done. We said our goodbyes, gave hugs and got in the car. We didn't even get out of the drive way and Ken asked if we could go out to eat. He had been wanting a salad and wanted to go to Olive Garden for spaghetti and salad. How could I turn him down. He won't get salad for 3 months. So at 7:30, we were going to dinner. It is a good thing, because while we ate, I was able to relax a little before the drive to Denver. And we went over the list of things we brought and realized we forgot a few things. Gave us a chance to stop home and pick them up. We also were joined at dinner by Linda and Ed Carpenter. It was nice to see them and visit for a bit. We didn't get to the hotel till 11:00, I unloaded the car. Luckily they had bellhop carts and it only took me 2 trips. Ken is on a 5 lb weight limit again, so he wasn't much help. I was completely exhausted and sore by the time I crawled into bed at midnight. I'm still sore this morning.
At least we made it here and all is well. I just have to go "home" and get organized, to our new home. Weird to think we will be in that little apartment for 5-6 weeks. It is smaller than I remembered. But it will do. At least it is clean, or it will be by tonight.
Our days will all be numbered now. The day Ken gets his Stem Cells, next Monday, is called day zero. They count backwards thru the days before, so today is day -7. Tomorrow will be day -6 etc., till his new birthday, day 0. Then we could up, day +1, day +10, etc. Till day +45 when he will be stronger. So, happy Day -7. Ready or not, here we go.
Yesterday was an exhausting day for both of us. After getting Ken home from the hospital, I continued to pack and get things ready. At 5:00, I realized I couldn't finish alone, so I called in a few friends to help. Thank you to Stephanie Kemp and Terry Williamson. You were live savers. They helped load the car, finish packing and move all the furniture around so the carpet cleaner can come in. I felt great about getting it all done. We said our goodbyes, gave hugs and got in the car. We didn't even get out of the drive way and Ken asked if we could go out to eat. He had been wanting a salad and wanted to go to Olive Garden for spaghetti and salad. How could I turn him down. He won't get salad for 3 months. So at 7:30, we were going to dinner. It is a good thing, because while we ate, I was able to relax a little before the drive to Denver. And we went over the list of things we brought and realized we forgot a few things. Gave us a chance to stop home and pick them up. We also were joined at dinner by Linda and Ed Carpenter. It was nice to see them and visit for a bit. We didn't get to the hotel till 11:00, I unloaded the car. Luckily they had bellhop carts and it only took me 2 trips. Ken is on a 5 lb weight limit again, so he wasn't much help. I was completely exhausted and sore by the time I crawled into bed at midnight. I'm still sore this morning.
At least we made it here and all is well. I just have to go "home" and get organized, to our new home. Weird to think we will be in that little apartment for 5-6 weeks. It is smaller than I remembered. But it will do. At least it is clean, or it will be by tonight.
Our days will all be numbered now. The day Ken gets his Stem Cells, next Monday, is called day zero. They count backwards thru the days before, so today is day -7. Tomorrow will be day -6 etc., till his new birthday, day 0. Then we could up, day +1, day +10, etc. Till day +45 when he will be stronger. So, happy Day -7. Ready or not, here we go.
Sunday, November 15, 2009
Superstar strikes again!
Ken has a green light. No blockages to take care of, so we are off to Denver. Actually, Ken is still in MCR, resting. I came home to pack. I have to pick him up around 2:30, finish some laundry, run a couple of errands and we are off to Denver on schedule for tomorrow. Ken is elated. His heart has always worried him, so now he knows for sure that he is strong and can do this. He is smiling from here to Texas.
Ken just went to surgery
We never expected this. On Thursday, when Ken got the results from him prostate biopsy, Vicki, the transplant coordinator said that was all we were waiting for. We had a green light to move forward with the transplant. She said just don't get sick. We are now sitting at a yellow light. He just went into surgery for an angiogram. They think there may be a blockage in his heart. Please God, let him be safe and no blockage. If he is ok, they will send him back to his room and he will be here for a day. Then we will get the green light and head to Denver. It will delay his transplant for a day or two. No big deal. But if there is a blockage and they have to put in a stint, wow, red light. It will hold things up for about a month. That will not be good. So, we should know in an hour or so, by 11:30 Denver time. I'll blog and start making phone calls. I'm staying confident till they tell me not to. Hope the news is great. Bev
Ken is in the hospital again
Here we go again. I brought Ken to the emergency room of Medical Center of the Rockies last night. They admitted him for chest pain. Ken had been hurting in his chest all day Saturday. Said it felt like someone had kicked him in the chest. We thought it might be his blood clots in his lungs or maybe his heart, so we braved the snow and came to the hospital. So far, they have run 2 sets of blood tests, 2 EKG's, a chest x-ray and a cat scan. I received the reports from the scan and x-ray this morning from the nurse, but I am waiting for the doctor to get here to really tell us what is going on. These people are great and the hospital is so new an beautiful. But... they are comparing things to the last time he was here and that was clear back in April. So much has happened since then.
Preliminary report from the nurse shows that his blood clots in his lungs are gone. Great news. But he might have fluid, dead spots or scarring in his lung. Well, he has scarring from the Thorasic Duct Ligation they did in April in Denver, so yeah he has scarring. Does he have fluid too. We just need to send the results to Denver and have them compare them to the scans from 2 weeks ago. I sure hope he doesn't have fluid, that would mean his pneumonia is back.
The nurse did say that Ken's heart rate goes way up when he gets up out of bed, so I am a little worried about that. But this nurse seems a little to eager to tell me the bad stuff, so I am keeping good thoughts till I talk to the doctor. He is going to be fine. He feels a little better this morning. Wish the doc would hurry up and get here.
But I will say this. I wish we could be doing this transplant with our Denver doctors, but in this hospital. If you every need to go to a hospital in this area, it is definitely worth the drive out here. The rooms are private, the staff is very attentive. We got right into the ER, no waiting. It is so much better than PVH. They had his Xray, blood test results and were sending him up for his cat scan all within the first hour last night. They are much slower at other hospitals.
I better get back down to Ken's room. If you don't hear from us right away, expect that all is well. If they say we can go home, we will have the snow to contend with, but we will blog again when we get home. I feel like a broken record to keep asking for your prayers, so I will just say thanks for praying for him and God Bless You this beautifully white Sunday morning. Love You, Bev
Preliminary report from the nurse shows that his blood clots in his lungs are gone. Great news. But he might have fluid, dead spots or scarring in his lung. Well, he has scarring from the Thorasic Duct Ligation they did in April in Denver, so yeah he has scarring. Does he have fluid too. We just need to send the results to Denver and have them compare them to the scans from 2 weeks ago. I sure hope he doesn't have fluid, that would mean his pneumonia is back.
The nurse did say that Ken's heart rate goes way up when he gets up out of bed, so I am a little worried about that. But this nurse seems a little to eager to tell me the bad stuff, so I am keeping good thoughts till I talk to the doctor. He is going to be fine. He feels a little better this morning. Wish the doc would hurry up and get here.
But I will say this. I wish we could be doing this transplant with our Denver doctors, but in this hospital. If you every need to go to a hospital in this area, it is definitely worth the drive out here. The rooms are private, the staff is very attentive. We got right into the ER, no waiting. It is so much better than PVH. They had his Xray, blood test results and were sending him up for his cat scan all within the first hour last night. They are much slower at other hospitals.
I better get back down to Ken's room. If you don't hear from us right away, expect that all is well. If they say we can go home, we will have the snow to contend with, but we will blog again when we get home. I feel like a broken record to keep asking for your prayers, so I will just say thanks for praying for him and God Bless You this beautifully white Sunday morning. Love You, Bev
Friday, November 13, 2009
Great news
Great news! My prostate biopsy came back completely clean, no sign of any cancer. I will have a followup exam in about six months. But for now, everything is clean and a go for Monday, BEAM day. Have a great weekend! Thanks for your support.
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