One week ago, I flew into LA and was admitted to the hospital. While time has gone by at a normal pace...I really wish I could just fast forward through the coming weeks. I am ready to go home... but now I have to stay here. After all that chemo over the last week, my blood counts will be dropping and my immune system will down. I have to stay in the hospital so I can live through this. This next week is going to be the hard one.
I know that God is in control and that He will get me through this, but sometimes I let the fear and anxiety get the best of me. Please keep me in your prayers. Just say a quick prayer for me when I come to your mind.
Tomorrow they will be giving me my stem cells back. Then, I just have to get my counts up.
Wednesday, April 24, 2013
Thursday, April 18, 2013
The schedule
I was admitted to the hospital yesterday. I got into my room about 5 and then began all the interviews with nurses and doctors. This is a teaching hospital so I will be questioned by many different people who are learning, as well as those who are handling my care.
Here is kind of a schedule of what I will be doing for the next couple weeks.
Thursday, April 18th- BCNU chemo
Friday-Monday, April 19th-22nd- etoposide and arabinoside each twice a day
Tuesday, April 23rd- melphalan
Wednesday, April 24th - rest
Thursday, April 25th- stem cell infusion
What they are doing is hitting me with high doses of chemo, then rescuing me with my stem cells, which they just put back in my body through my IV line. After I get my stem cells the rest is about monitoring my recovery. My blood counts will drop really low the week following my chemo. I may need blood or platelet infusions, and I am at a high risk for infection.
When they fill like my counts are good enough, usually 10-15 days after receiving stem cells, I will be released but have to stay in the area for up to two more weeks before I get to go home. It really all depends on how well and how quickly I recover.
Here is kind of a schedule of what I will be doing for the next couple weeks.
Thursday, April 18th- BCNU chemo
Friday-Monday, April 19th-22nd- etoposide and arabinoside each twice a day
Tuesday, April 23rd- melphalan
Wednesday, April 24th - rest
Thursday, April 25th- stem cell infusion
What they are doing is hitting me with high doses of chemo, then rescuing me with my stem cells, which they just put back in my body through my IV line. After I get my stem cells the rest is about monitoring my recovery. My blood counts will drop really low the week following my chemo. I may need blood or platelet infusions, and I am at a high risk for infection.
When they fill like my counts are good enough, usually 10-15 days after receiving stem cells, I will be released but have to stay in the area for up to two more weeks before I get to go home. It really all depends on how well and how quickly I recover.
Friday, April 12, 2013
Transplant is Back On
I finished
my second COAP cycle on March 21st.
The next week, March 25th-the 29th, my doctor had
me taking a bunch of different tests. I
had an EKG, an echocardiogram, a pulmonary exam (lung function test), a bunch
of labs, and of course a new PET scan.
Everything looked good!! EVEN the PET scan!! Yay!! Thank you Jesus!!!
So, it
looks like this transplant is officially back on!! It was almost a year ago that I thought I was
going to have this transplant but didn’t get to after a PET scan showed new
growth. One thing that I have been
learning the last few months is that God’s timing is perfect. I may never know why, but I definitely believe
that my transplant postponement happened for a reason.
I do
appreciate and ask for your continued prayers, not only for me, but for my
family. I know that it is hard on my
husband that he is not here at this time, and my girls….well they have never
gone a day without their Mama. And on
top of that, they don’t have their Daddy at home right now either. Although they will have my Mom here, which I
am so thankful for, I know this separation is going to be hard for them to deal
with. So, please remember them in your
prayers. Thank you!
Sunday, February 24, 2013
COAP- Cycle 1
I have now had both infusions of my chemo, but I am still taking my prednisone until day 14, or 15 since I started a day late.
When I got home from my first infusion, on Valentine's, I just felt kind of drugged...high...kind of out of it. It was a strange feeling to say the least. That night, for some reason, I stayed up doing random searches on the computer. I think I was trying to plan the wedding I still want to have. :) (I blame this on Sara for making me look at bridesmaid dresses.) I also discovered that the girls Valentine's bouquet had both of their birth month flowers (not on purpose), so then I had to find out what the husband's and mine looked like when combined with the girls. Just random, strange stuff...I think those drugs really gave me some kind of high.
For the next few days, I continued to have a kind of lightheaded, off-balance sort of feeling. It is kind of hard to explain. I took my temperature, since I had been having fevers previously, but they stopped. Actually my temperature was low..like 96-97, but I felt fine. The night sweats pretty much stopped also. I still sweat, or maybe drain, at night, but not bad. I am not waking up soaked, and the sheets don't really get wet at all.
The large lump that I had under my underarm started going down right away, I think. It is almost non-existent now, which I think is awesome considering it was the size of a walnut. The doctor said the lump, or possibly multiple lumps, were blocking my lymphatic drainage because I was having strange swelling, or retention, on my left side. As the lump has disappeared, so has this strange swelling. Yay! Also, my rash, which the doctor doesn't believe is from my cancer, but I always get with my cancer, is gone. My skin is nice and smooth again!
I was finally starting to feel right in the head again, then it was Thursday again, and time for another chemo. The second infusion didn't seem to make me as crazy. I still felt pretty normal. At least, until last night. At about 4:30, I smelt something that made me crave Chinese food. I came downstairs and googled recipes for fried rice and teriyaki sauce and started cooking. I was finished making, and even eating a little after 6, which is really strange for me. I didn't get distracted...I was very focused on making that food. And, it was delicious..at least it was exactly what I wanted. Yum! I think the girls were a bit confused because we don't normally eat that early, but...
I am still trying to eat good, but it is harder. Maybe it is the steroids, or whatever else they give me, but sometimes I just crave food and have to eat then. I guess I need to stock up on healthier snacks again. I seem to be losing a little bit more weight, possibly because of the cancer or the treatment. It is hard to tell you when I lost it because my scale at home hasn't been working, but when they weighed me on Thursday I was down to 138. (Before diet I was weighing 170-175 and with diet I had gotten down to about 145.)
Thank you for your continued support and prayers.
When I got home from my first infusion, on Valentine's, I just felt kind of drugged...high...kind of out of it. It was a strange feeling to say the least. That night, for some reason, I stayed up doing random searches on the computer. I think I was trying to plan the wedding I still want to have. :) (I blame this on Sara for making me look at bridesmaid dresses.) I also discovered that the girls Valentine's bouquet had both of their birth month flowers (not on purpose), so then I had to find out what the husband's and mine looked like when combined with the girls. Just random, strange stuff...I think those drugs really gave me some kind of high.
For the next few days, I continued to have a kind of lightheaded, off-balance sort of feeling. It is kind of hard to explain. I took my temperature, since I had been having fevers previously, but they stopped. Actually my temperature was low..like 96-97, but I felt fine. The night sweats pretty much stopped also. I still sweat, or maybe drain, at night, but not bad. I am not waking up soaked, and the sheets don't really get wet at all.
The large lump that I had under my underarm started going down right away, I think. It is almost non-existent now, which I think is awesome considering it was the size of a walnut. The doctor said the lump, or possibly multiple lumps, were blocking my lymphatic drainage because I was having strange swelling, or retention, on my left side. As the lump has disappeared, so has this strange swelling. Yay! Also, my rash, which the doctor doesn't believe is from my cancer, but I always get with my cancer, is gone. My skin is nice and smooth again!
I was finally starting to feel right in the head again, then it was Thursday again, and time for another chemo. The second infusion didn't seem to make me as crazy. I still felt pretty normal. At least, until last night. At about 4:30, I smelt something that made me crave Chinese food. I came downstairs and googled recipes for fried rice and teriyaki sauce and started cooking. I was finished making, and even eating a little after 6, which is really strange for me. I didn't get distracted...I was very focused on making that food. And, it was delicious..at least it was exactly what I wanted. Yum! I think the girls were a bit confused because we don't normally eat that early, but...
I am still trying to eat good, but it is harder. Maybe it is the steroids, or whatever else they give me, but sometimes I just crave food and have to eat then. I guess I need to stock up on healthier snacks again. I seem to be losing a little bit more weight, possibly because of the cancer or the treatment. It is hard to tell you when I lost it because my scale at home hasn't been working, but when they weighed me on Thursday I was down to 138. (Before diet I was weighing 170-175 and with diet I had gotten down to about 145.)
Thank you for your continued support and prayers.
Thursday, February 14, 2013
Valentine Chemo
Valentine's Day
Today I woke up already dreading having to go to chemo today, but...
I tried making the girls special Valentine pancakes...neither of them liked or wanted them...they wanted their regular pancakes. :( Well, I tried.
Then I really just got the girls and I ready. I packed the girls' lunches and dropped them of with the neighbor for their Valentine party and play date. :) And packed a to-go salad for me.
Then, off I went to get my new chemo. I talked to the doctor and he explained that some of the drugs were different than the chemo regimen that we had previously discussed because these drugs are simply unavailable now; no longer made. So instead of C-MOPP, I am on a regimen of COAP; Cyclophosphamide, Vincristine(Onocovin), Cytarabine(ARA-C), and Prednisone. My chemo cycles are 28 days long. I have chemo treatments on day 1 (today) and day 8 (next Thursday), then they want me to go back to the office for a shot of Neulasta(just helps blood counts) on day 9. So, chemo once a week for two weeks, off two weeks, repeat. The predisone is a tablet I am supposed to take day 1-14.
I forgot to mention in my previous post that I am now having at least somewhat frequent fevers, mostly at night. The nights that my fever are the highest, I have night sweats. Which means that I wake up 1-3 times throughout the night drenched; my clothes and the sheets below and on top of me soaked. Yuck! So, I change my clothes and switch to the other side of the bed, hoping it doesn't happen again before I wake up. Both the fever and night sweats are common for my lymphoma but...I think we are going to need a new mattress when this is over. :)
I think that is it for now...Thank you for your continued support, love, and prayers!
Today I woke up already dreading having to go to chemo today, but...
I tried making the girls special Valentine pancakes...neither of them liked or wanted them...they wanted their regular pancakes. :( Well, I tried.
Then I really just got the girls and I ready. I packed the girls' lunches and dropped them of with the neighbor for their Valentine party and play date. :) And packed a to-go salad for me.
Then, off I went to get my new chemo. I talked to the doctor and he explained that some of the drugs were different than the chemo regimen that we had previously discussed because these drugs are simply unavailable now; no longer made. So instead of C-MOPP, I am on a regimen of COAP; Cyclophosphamide, Vincristine(Onocovin), Cytarabine(ARA-C), and Prednisone. My chemo cycles are 28 days long. I have chemo treatments on day 1 (today) and day 8 (next Thursday), then they want me to go back to the office for a shot of Neulasta(just helps blood counts) on day 9. So, chemo once a week for two weeks, off two weeks, repeat. The predisone is a tablet I am supposed to take day 1-14.
I forgot to mention in my previous post that I am now having at least somewhat frequent fevers, mostly at night. The nights that my fever are the highest, I have night sweats. Which means that I wake up 1-3 times throughout the night drenched; my clothes and the sheets below and on top of me soaked. Yuck! So, I change my clothes and switch to the other side of the bed, hoping it doesn't happen again before I wake up. Both the fever and night sweats are common for my lymphoma but...I think we are going to need a new mattress when this is over. :)
I think that is it for now...Thank you for your continued support, love, and prayers!
Monday, February 4, 2013
Update February 2013
Well I guess I need to write an update since some of you might be wondering what is going on with me.
I had to re-schedule my PET scan for December 15th. I got the results a week or so later and the doctor said the cancer is still growing and spreading. There were some new areas of activity. One of those areas was my underarms, specifically my left side. What is weird is that I felt a lump, but it just kind of came out of nowhere...it was large quickly...and painful, so I didn't really know that it was my lymphoma until the doctor confirmed it. I was just thinking, "oh great, what else is wrong with me".
When the doctor told me my results, I asked if I could be re-biopsied. I just wanted an additional confirmation that we were fighting the right disease. So, mid-January (sorry don't remember the date) I went in to have a biopsy done. They took a core needle biopsy from my painful underarm lymph node. Which for some strange reason helped the lump to be less painful.
The same day as my biopsy, I also had a dye study done on my port. I had started having pain when the nurses flushed my port. When I went in early January to have my port flushed I warned to nurse and when she tried to push the saline in she said that it was hard to do. She could also tell that it was quite painful for me and asked if it felt like pain or pressure, to which I answered pressure. It is a strange feeling to try to explain but it hurt, believe me. I am pretty tough and it was bringing tears to my eyes. Because of this they ordered a dye study. The dye study showed that my port catheter was blocked, by forcing dye and saline in my port, another painful experience. At first they told me there was a hole and then that my lymphoma was pinching off the catheter, so....either way it was not functional.
The doctor spoke with me about what I wanted to do, as far as treatment. He of course suggested beginning chemo again, and going with the regimen that he had spoke to me about before. He also said that the port would need to come out, and he really wanted it to be replaced.
So, last Friday, the 1st, I had a new port put in and the old one taken out. I had some nice neighbors watch the girls for me and another one drive me and wait for me. Thank you ladies very much! The procedure took a little longer than expected, but turned out fine. I am a little sore and stiff, but fine...as long as nothing touches my incision sites. Of course with two little girls...let's just say I scream sometimes.
I have asked my doctor's office for a schedule of the chemo cycles, but the nurse said the doctor is no longer sure what cocktail he wants to start me on. So...until then I am waiting. My sweet neighbors have also volunteered to help with and watch the girls when I begin treatment. I am extremely thankful for their help, especially since my husband is away for work for a few months. Thank you again ladies!
So....that is it for now. Thank you for your continued prayers and concern! I will try to be better about updating.
I had to re-schedule my PET scan for December 15th. I got the results a week or so later and the doctor said the cancer is still growing and spreading. There were some new areas of activity. One of those areas was my underarms, specifically my left side. What is weird is that I felt a lump, but it just kind of came out of nowhere...it was large quickly...and painful, so I didn't really know that it was my lymphoma until the doctor confirmed it. I was just thinking, "oh great, what else is wrong with me".
When the doctor told me my results, I asked if I could be re-biopsied. I just wanted an additional confirmation that we were fighting the right disease. So, mid-January (sorry don't remember the date) I went in to have a biopsy done. They took a core needle biopsy from my painful underarm lymph node. Which for some strange reason helped the lump to be less painful.
The same day as my biopsy, I also had a dye study done on my port. I had started having pain when the nurses flushed my port. When I went in early January to have my port flushed I warned to nurse and when she tried to push the saline in she said that it was hard to do. She could also tell that it was quite painful for me and asked if it felt like pain or pressure, to which I answered pressure. It is a strange feeling to try to explain but it hurt, believe me. I am pretty tough and it was bringing tears to my eyes. Because of this they ordered a dye study. The dye study showed that my port catheter was blocked, by forcing dye and saline in my port, another painful experience. At first they told me there was a hole and then that my lymphoma was pinching off the catheter, so....either way it was not functional.
The doctor spoke with me about what I wanted to do, as far as treatment. He of course suggested beginning chemo again, and going with the regimen that he had spoke to me about before. He also said that the port would need to come out, and he really wanted it to be replaced.
So, last Friday, the 1st, I had a new port put in and the old one taken out. I had some nice neighbors watch the girls for me and another one drive me and wait for me. Thank you ladies very much! The procedure took a little longer than expected, but turned out fine. I am a little sore and stiff, but fine...as long as nothing touches my incision sites. Of course with two little girls...let's just say I scream sometimes.
I have asked my doctor's office for a schedule of the chemo cycles, but the nurse said the doctor is no longer sure what cocktail he wants to start me on. So...until then I am waiting. My sweet neighbors have also volunteered to help with and watch the girls when I begin treatment. I am extremely thankful for their help, especially since my husband is away for work for a few months. Thank you again ladies!
So....that is it for now. Thank you for your continued prayers and concern! I will try to be better about updating.
Thursday, December 6, 2012
Update
I kind of took a few months off the blog, but thought I would try to catch you up.
Since my last post things have changed a little. I have not been quite as strict with my diet as a was initially. I am still trying to avoid the processed foods, sugar, gluten...but I am not eating as much raw veggies and I eat meat daily. I haven't been taking my supplements regularly either. I also stopped eating the Budwig Protocol smoothie a little over a month ago. It was just getting to the point where I was having a really hard time drinking it. It's not that it was horrible, it just wasn't that good, and my body was starting to revolt and needed a change. So, usually for breakfast I have a fried egg with sea salt and pepper, maybe a dash of Tabasco here and there. Lunch for a long time was mainly a salad with raw sunflower seeds and avocado. I finally gave up on dressing...because they just don't taste good without sweetener. For dinner I would try to eat basically with the family, with maybe a few alterations. For example, I might have organic meat while theirs is not, or I use gluten free pasta for my spaghetti and regular whole grain for them.
I am not going to tell you that I haven't cheated...I have. I ate some of the girls Halloween candy, I have had a few frozen pizzas, some Spam, and during Thanksgiving time...I ate rolls, pumpkin pie, green bean casserole...yum. I have by no means been perfect at this, but I still feel that I am eating much better than before and am overall, more healthy.
I am finally back in a healthy weight range after losing 20 pounds!! Yay! I always told my husband that I didn't want to change my diet to lose weight, but changing my diet definitely helped me lose weight. Although I have been exercising as well, I really think all that weight came off due to my diet change. I started exercising with a neighbor while my Mom was here, so she watched the girls. After my Mom left, it was harder to go work out with the neighbor because our kid's were just not cooperating with us. (Sorry Neighbor!) Since my husband was now home, he and I started going to the gym 3x a week. This other gym is just easier to take your kids to because they are just behind a half wall. You can see them; they can see you; you can talk to each other without having to stop the workout. Anyway, I got up to running/jogging a 12 minute mile. I was trying to add on to it but we haven't been in awhile. I hope we can get back in there soon.
My hair is growing back in, and it is growing in curly. For a few months I was using the clippers to keep my hair short because I thought that I was going to be losing it again and didn't want the girls, or me, to get excited about the hair, just to watch it fall out again. Then I thought I might as well just let it grow. I have been letting it grow since, I believe, mid to late August, and it is about 2 inches long. I just got my first haircut, which was really just a shape up to help it look more even and lay nicer. I still can't believe it is curly...it is kind of funny.
I am finally scheduled to get another PET scan, so I would really appreciate a few extra prayers. My PET scan is on the morning of Monday, the 10th. I, of course, won't get the results until later that week.
While I pray for, and still would like you all to pray for, complete healing; I just want you to pray that God's will be done. I would love for Him to show His power and awesomeness through ridding me of my cancer! I would love to tell people that only God saved me from this cancer! But I guess I should already be shouting and telling people how God has already saved me...and I am not very good at that. GOD SAVED ME!!! He sent His precious son, Jesus, to die on the cross for MY SINS! Because of this great gift, I have eternal life. He has already saved my eternal life, and that is all that really matters. I only pray that He will allow me to continue this life to be a better witness for Him, and a witness to my daughters...to my friends and family, who don't know Jesus. What kind of friend am I really, if I don't share the Truth!
Since my last post things have changed a little. I have not been quite as strict with my diet as a was initially. I am still trying to avoid the processed foods, sugar, gluten...but I am not eating as much raw veggies and I eat meat daily. I haven't been taking my supplements regularly either. I also stopped eating the Budwig Protocol smoothie a little over a month ago. It was just getting to the point where I was having a really hard time drinking it. It's not that it was horrible, it just wasn't that good, and my body was starting to revolt and needed a change. So, usually for breakfast I have a fried egg with sea salt and pepper, maybe a dash of Tabasco here and there. Lunch for a long time was mainly a salad with raw sunflower seeds and avocado. I finally gave up on dressing...because they just don't taste good without sweetener. For dinner I would try to eat basically with the family, with maybe a few alterations. For example, I might have organic meat while theirs is not, or I use gluten free pasta for my spaghetti and regular whole grain for them.
I am not going to tell you that I haven't cheated...I have. I ate some of the girls Halloween candy, I have had a few frozen pizzas, some Spam, and during Thanksgiving time...I ate rolls, pumpkin pie, green bean casserole...yum. I have by no means been perfect at this, but I still feel that I am eating much better than before and am overall, more healthy.
I am finally back in a healthy weight range after losing 20 pounds!! Yay! I always told my husband that I didn't want to change my diet to lose weight, but changing my diet definitely helped me lose weight. Although I have been exercising as well, I really think all that weight came off due to my diet change. I started exercising with a neighbor while my Mom was here, so she watched the girls. After my Mom left, it was harder to go work out with the neighbor because our kid's were just not cooperating with us. (Sorry Neighbor!) Since my husband was now home, he and I started going to the gym 3x a week. This other gym is just easier to take your kids to because they are just behind a half wall. You can see them; they can see you; you can talk to each other without having to stop the workout. Anyway, I got up to running/jogging a 12 minute mile. I was trying to add on to it but we haven't been in awhile. I hope we can get back in there soon.
My hair is growing back in, and it is growing in curly. For a few months I was using the clippers to keep my hair short because I thought that I was going to be losing it again and didn't want the girls, or me, to get excited about the hair, just to watch it fall out again. Then I thought I might as well just let it grow. I have been letting it grow since, I believe, mid to late August, and it is about 2 inches long. I just got my first haircut, which was really just a shape up to help it look more even and lay nicer. I still can't believe it is curly...it is kind of funny.
I am finally scheduled to get another PET scan, so I would really appreciate a few extra prayers. My PET scan is on the morning of Monday, the 10th. I, of course, won't get the results until later that week.
While I pray for, and still would like you all to pray for, complete healing; I just want you to pray that God's will be done. I would love for Him to show His power and awesomeness through ridding me of my cancer! I would love to tell people that only God saved me from this cancer! But I guess I should already be shouting and telling people how God has already saved me...and I am not very good at that. GOD SAVED ME!!! He sent His precious son, Jesus, to die on the cross for MY SINS! Because of this great gift, I have eternal life. He has already saved my eternal life, and that is all that really matters. I only pray that He will allow me to continue this life to be a better witness for Him, and a witness to my daughters...to my friends and family, who don't know Jesus. What kind of friend am I really, if I don't share the Truth!
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