Like cold water to a weary soul is good news from a distant land. Proverbs 25:25
Yesterday morning I woke up at 5:15 a.m. and headed to UCLA at 6:30 a.m. arriving a half hour early at 9 a.m. (You might not care about that detail, but I do for the next time I take the journey and need to remember what time I should leave!)
UCLA Medical Center is state-of-the-art...gorgeous buildings on the outside and I'm sure the operating rooms and maybe even the hospital rooms are awesome. I would think if you have the best doctors and latest technology in care that it would trickle down to excellence in the office too, but I guess not. From dirty restrooms and glorified hospital food at the on-site restaurant to a DMV style-office and janitorial closet-sized exam rooms, one might be wondering when the state-of-the-art stuff is going to show up.
Well, he did and his name is Dr. Gary Schiller. I also was able to meet Dr. Mickey Liao, a Fellow that you would NEVER guess was a "Mickey!" Both were very nice and Dr. Schiller is an international expert in leukemia which is a bonus. He explained that we'll be doing a cord blood donation in my case. Well that is what he hopes for anyway. We'll be looking for a match in both banks, the cord blood and the bone marrow registry and see what happens first. Usually cord blood is easier because it's "off the shelf" meaning when you find a match the bone marrow transplant can go right away, but if it's a human donor you have to wait many weeks while they get verified, tested, work with their schedule, etc. etc.
The risk for graft-vs.-host disease is lower with cord blood, but the risk for infection is higher because it takes longer for the body to replenish cells with the cord blood donations. You will be praying for me on that!
The other news was that I'll be staying at UCLA for a good 6 weeks, going home earlier if I am doing well. The first 4 weeks is in the hospital, while the last 2 weeks is nearby at the guest house (which is a subsidized hotel room the hospital contracts at nearby hotels). I might not be 100% clear on this because they don't tell us everything until we need to know. It's unclear right now whether my whole family can come and stay at the guest house which I think is available for them while I'm in the hospital. We'll see.
So we'll know in 10 days to 2 weeks whether there is a cord blood match for me. And if so, I'm on my way to UCLA flying through the doors yelling like Linguini in the movie Ratatouille when he says, "Let's DO this thing!" Unfortunately, I might miss Thanksgiving and Christmas this year, but 2009 looks awesome.
What made this trip most special was visiting with friends in Torrance afterwards. We used to live there and it's always like time has passed when we get together with the Newharts and the Dahls. Those of you who couldn't get together this time, we hope to see you another time!
While we were visiting the hospital called and they had drawn the wrong tube for the matching process to begin. So it's a good thing I hadn't gone home yet! I spent the night at the Dahl's and went back in the morning to redraw. My blood count was normal again with platelets a whopping 310,000! So that was good news to me. Three years ago, I remember once I went home, I'd be home 1 week, then have to go into the hospital for 1 week for transfusions.
So I'm very thankful for all of this good news. The road ahead will be very difficult, but friends and family like you make it so much easier! Thank you for your meals, visits, notes and cards, presents, pictures for my board, cleaning help, childcare help, hospitality, and especially prayers. We couldn't do this without you!
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P.S. Happy Birthday to Trevor, my youngest who turned 7 today!
Hope Notes from Krista and Mike is a journal of encouragement as this Christian mom, and supportive husband and caregiver, face the ups and downs of a stem cell transplant after recurring leukemia. Start at the beginning by clicking September 2008 in the archives and reading forward. It's not always pretty, but it's real. We pray you will be blessed by these passages in some way.
Wednesday, October 29, 2008
Thursday, October 23, 2008
Better Days and Great News
I had to blog tonight to tell you how each day is getting better and BETTER. Sunday afternoon and evening saw a major turnaround from my down-in-the-dumps feeling that I felt Saturday and early Sunday morning.
The encouragement I received really seemed to do the trick and got me back on track with living in the knowledge of the Truth that God is with me every step of the way. I knew that, but I wasn't living in the that...I was living as if the opposite it were true. And that's no good for anyone.
It is friends' notes like this one that do my soul a lot of GOOD: Even Jesus cried out from the cross, "My God , my God , why have you forsaken me?" It is OK to have intense feelings and to voice them...even feelings of desperation and anger...but you don't make your home there. You are on a pilgrimage with the Lord and despite the feelings and ups and downs you are going from strength to strength.
I love Psalm 84:5-7
"Blessed are those whose strength is in you, who have set their hearts on pilgrimage. As they pass through the valley of Baca , they make it a place of springs. The autumn rains also cover it with with pools. They go from strength to strength until each appears before God in Zion."
I love it because Baca means tears and those tears also become a place of refreshing. Even now in your weakest physical state the Lord says you are going from strength to strength. It's OK to be weak because HE is our strength...we are going from His strength to His strength
Thank you my dear friend Michelle for that incredible reminder that feeling badly is ok, that He is our strength when we are weak. I will continue to seek Him and call out to Him in my despair.
But that was early in the week, and now Friday is upon us. I mentioned each day has been better than the day before. It's amazing to be doing so well at this point. I have no idea what next week holds, but I'm thankful for the progress I've seen. And my blood work came back very stable on Wednesday. My white blood count is 5.1, hemoglobin was 10.4, and platelets were an amazing 210k. I also had a bone marrow biopsy on Wednesday and got the news back that it looks excellent...my bone marrow had no leukemic cells and we're on track for UCLA. I go there Tuesday for my first consultation. I'm thrilled that my specialist at UCLA, Dr. Gary Schiller, is an international expert on leukemia...that's all he does and he's the best! So, I'm in great hands at UCLA! We'll visit with friends while we're down there too. My mom and her husband Glen arrived Thursday and will be able to stay with the kids when we go. They brought their large RV and have made home in our front yard!
On the kid front, Trevor and Adam are the best of friends and have been getting along SO well! I have really been enjoying their conversations and all the laughter we've shared in the last few days! The other night we spent at least a half hour trying out British accents, which I'm infamous for (how hilariously bad my accent is - a cross between Bangladesh and Texan!) Adam who is really against this whole business of British accents has the best one of all and should really be doing plays. Trevor is definitely an aficionado of the British accent, but sounds either Scottish or Australian sometimes, taking after his mother, but still much better than she!
This will warm your heart: One morning when breakfast was served and Trevor came to the counter bar to eat with Adam, he said, "I want to sit next to my best buddy." Awwwww! That even really made Adam smile when Mike was telling me about it later at lunch after our deep conversation about Trevor's loyalties. Trevor was outside drawing a lemon tree that struck his fancy this a.m., so he didn't know we were gushing about him.
Talk to you soon...I've enjoyed seeing you as you drop off meals and visit. You are the dearest friends! You might think when you see me with my full head of hair (yes!), my pale, but upbeat and seemingly normal self, that I might not really need your help. On the contrary! I suck it up for you and when I talk I feel "outside myself," thoroughly enjoying the whole time together! Then after you leave, it all comes rushing back, woooomph! Please don't let that stop you're visiting with me because I really enjoy the "outside myself" feeling! Much of the day I have to rest and cannot be "up" which is why my husband is still working from home for me. It feels as though I am only 25%, sometimes 50% and sometimes 75% of myself right now (it varies throughout the day), and Mike's been putting in long hours - with the kids and household, then 8 hour days of work, and he gets to bed at 2 a.m.! So we definitely still need the extra help, and appreciate your kindness SOOOO much!
The encouragement I received really seemed to do the trick and got me back on track with living in the knowledge of the Truth that God is with me every step of the way. I knew that, but I wasn't living in the that...I was living as if the opposite it were true. And that's no good for anyone.
It is friends' notes like this one that do my soul a lot of GOOD: Even Jesus cried out from the cross, "My God , my God , why have you forsaken me?" It is OK to have intense feelings and to voice them...even feelings of desperation and anger...but you don't make your home there. You are on a pilgrimage with the Lord and despite the feelings and ups and downs you are going from strength to strength.
I love Psalm 84:5-7
"Blessed are those whose strength is in you, who have set their hearts on pilgrimage. As they pass through the valley of Baca , they make it a place of springs. The autumn rains also cover it with with pools. They go from strength to strength until each appears before God in Zion."
I love it because Baca means tears and those tears also become a place of refreshing. Even now in your weakest physical state the Lord says you are going from strength to strength. It's OK to be weak because HE is our strength...we are going from His strength to His strength
Thank you my dear friend Michelle for that incredible reminder that feeling badly is ok, that He is our strength when we are weak. I will continue to seek Him and call out to Him in my despair.
But that was early in the week, and now Friday is upon us. I mentioned each day has been better than the day before. It's amazing to be doing so well at this point. I have no idea what next week holds, but I'm thankful for the progress I've seen. And my blood work came back very stable on Wednesday. My white blood count is 5.1, hemoglobin was 10.4, and platelets were an amazing 210k. I also had a bone marrow biopsy on Wednesday and got the news back that it looks excellent...my bone marrow had no leukemic cells and we're on track for UCLA. I go there Tuesday for my first consultation. I'm thrilled that my specialist at UCLA, Dr. Gary Schiller, is an international expert on leukemia...that's all he does and he's the best! So, I'm in great hands at UCLA! We'll visit with friends while we're down there too. My mom and her husband Glen arrived Thursday and will be able to stay with the kids when we go. They brought their large RV and have made home in our front yard!
On the kid front, Trevor and Adam are the best of friends and have been getting along SO well! I have really been enjoying their conversations and all the laughter we've shared in the last few days! The other night we spent at least a half hour trying out British accents, which I'm infamous for (how hilariously bad my accent is - a cross between Bangladesh and Texan!) Adam who is really against this whole business of British accents has the best one of all and should really be doing plays. Trevor is definitely an aficionado of the British accent, but sounds either Scottish or Australian sometimes, taking after his mother, but still much better than she!
This will warm your heart: One morning when breakfast was served and Trevor came to the counter bar to eat with Adam, he said, "I want to sit next to my best buddy." Awwwww! That even really made Adam smile when Mike was telling me about it later at lunch after our deep conversation about Trevor's loyalties. Trevor was outside drawing a lemon tree that struck his fancy this a.m., so he didn't know we were gushing about him.
Talk to you soon...I've enjoyed seeing you as you drop off meals and visit. You are the dearest friends! You might think when you see me with my full head of hair (yes!), my pale, but upbeat and seemingly normal self, that I might not really need your help. On the contrary! I suck it up for you and when I talk I feel "outside myself," thoroughly enjoying the whole time together! Then after you leave, it all comes rushing back, woooomph! Please don't let that stop you're visiting with me because I really enjoy the "outside myself" feeling! Much of the day I have to rest and cannot be "up" which is why my husband is still working from home for me. It feels as though I am only 25%, sometimes 50% and sometimes 75% of myself right now (it varies throughout the day), and Mike's been putting in long hours - with the kids and household, then 8 hour days of work, and he gets to bed at 2 a.m.! So we definitely still need the extra help, and appreciate your kindness SOOOO much!
Sunday, October 19, 2008
Downs and Ups - and Adjustment to My Last "Tips" Post
First the adjustment to my "tips" post from Friday: I may be regretting telling people not to call after all! So NEVER MIND that one! I forgot that I can easily turn off my phone when I can't take a call and you can certainly leave a message for me. Weekends are easier to call me because minutes are "free" then. But, I'd be glad to hear from my dear ones anytime.
I knew the transition would be hard, emotionally speaking. It is just so weird going from round-the-clock care to self-sufficiency in one night. Then at home, I am noticing the neuropathy I didn't seem to have in the hospital, or maybe I did and it was taken care of by pain medications for headaches. The headaches go on and appear every morning when I wake up, sometimes waking me up in the middle of the night. Seems like laying down for more than a few hours is what triggers it. On top of all this, my eyesight is blurry and my eyes and skin are mildly painful. I got quite discouraged, as some of you who are on Facebook may have noticed when I set my status to read: "Krista took her eyes off the Lord when suffering lingered on, much like Peter when he began to walk toward Jesus on the water and then sank."
I wanted to share with you tonight how God is still here and proves himself to me all the time, which He doesn't have to do at all since He is who He is and the Bible is all I should need. However, He knows how weak I am and cares about me so much that He's willing to do that for me. I will never understand the measure of how much He loves me or the amount of grace He shows me by the hour.
As soon as Mike came home from church, he encouraged me with words from a friend who conveyed her appreciation for this blog and encouraged me not to stop. Thank you Nancy, you don't know how much I needed to hear that today of all days.
Then, as soon as I told Mike how discouraged I felt today, the phone rang and it was my dear friend Lisa from CO, who never ceases to inspire me. I LOVE this lady and her family so much and God just knew I needed to hear from her right then. I love the timing--how perfect is our God?
Then later, as I was resting, laptop nearby :), I noticed my husband in the other room, had taken a moment to respond to my status. Please note that we do have great conversations in person, but he just felt he needed to respond to my pitiful status to set the record straight - not only for me, but for all those who were paying attention. Isn't he wonderful? So for those of you who aren't on Facebook, I'd like you to see Mike's response to me (and mine to him) and how his final response to me shows me so much that God has not left me for a minute despite my feeling like "God has left the building," another pitiful utterance of how it feels when you are suffering for longer than 2 weeks.
So as you recall my status was "Krista took her eyes off the Lord when suffering lingered on, much like Peter when he began to walk toward Jesus on the water and then sank."
Then, Mike wrote, "Jesus picked him up when Peter called. :) "
To which I commented, "Oh YES, you are so right...and in my discouragement, I had forgotten the end of the story! Thanks, honey!"
And what brought me back to my knees in heartfelt prayer, was Mike's realization, "Hey I think that's what Ricky prayed for everyone today. The message was from James 5:19-20 'My brothers, if one of you should wander from the truth and someone should bring him back, 20remember this: Whoever turns a sinner from the error of his way will save him from death and cover over a multitude of sins.' He (Pastor Ricky) prayed that EVERYONE there would bring someone back to the truth, and there you are. Isn't God good?"
So, as you can see, God answered Ricky's prayer in this family. Mike brought me back to the truth that God is there even in my suffering. And Nancy brought me back to the blog today, yay Nancy! And Lisa also encouraged my soul and even gave me a great tip that I'll share with you in another post about how to make online reading easier.
To top it all off, this evening, I received a wonderful message from someone I've never even met. What a blessing to read: "We've never met, but I want you to know that I believe God has given me a burden to pray for you and your family. You are always on my heart and in my prayers. I am often overwhelmed by the Love Jesus has for you. It is altogether wide, long, high and deep (Ephesians 3:18) May He continue to smile upon you and your family even in the rough patches. May His light continue to shine in darkness and may you have the peace which passes all understanding. Prayin' for you sister." That was four ways God used others to reach me today. I am feeling much more hopeful tonight.
I am also overwhelmed by the love of my brothers and sisters in Christ, as seen by this praying sister whom I've never met. Is that not incredible? And I know there are many, many, even some readers here, whom I've never met, yet who are praying for me now and who continue as I face an even greater battle ahead. THANK YOU, THANK YOU!
I hope you enjoyed today's post and please don't hesitate to contact me. God works through others as well. You all have been such a blessing, and I'd hate to lose touch just because I'm home.
Deuteronomy 31:8 "The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
I knew the transition would be hard, emotionally speaking. It is just so weird going from round-the-clock care to self-sufficiency in one night. Then at home, I am noticing the neuropathy I didn't seem to have in the hospital, or maybe I did and it was taken care of by pain medications for headaches. The headaches go on and appear every morning when I wake up, sometimes waking me up in the middle of the night. Seems like laying down for more than a few hours is what triggers it. On top of all this, my eyesight is blurry and my eyes and skin are mildly painful. I got quite discouraged, as some of you who are on Facebook may have noticed when I set my status to read: "Krista took her eyes off the Lord when suffering lingered on, much like Peter when he began to walk toward Jesus on the water and then sank."
I wanted to share with you tonight how God is still here and proves himself to me all the time, which He doesn't have to do at all since He is who He is and the Bible is all I should need. However, He knows how weak I am and cares about me so much that He's willing to do that for me. I will never understand the measure of how much He loves me or the amount of grace He shows me by the hour.
As soon as Mike came home from church, he encouraged me with words from a friend who conveyed her appreciation for this blog and encouraged me not to stop. Thank you Nancy, you don't know how much I needed to hear that today of all days.
Then, as soon as I told Mike how discouraged I felt today, the phone rang and it was my dear friend Lisa from CO, who never ceases to inspire me. I LOVE this lady and her family so much and God just knew I needed to hear from her right then. I love the timing--how perfect is our God?
Then later, as I was resting, laptop nearby :), I noticed my husband in the other room, had taken a moment to respond to my status. Please note that we do have great conversations in person, but he just felt he needed to respond to my pitiful status to set the record straight - not only for me, but for all those who were paying attention. Isn't he wonderful? So for those of you who aren't on Facebook, I'd like you to see Mike's response to me (and mine to him) and how his final response to me shows me so much that God has not left me for a minute despite my feeling like "God has left the building," another pitiful utterance of how it feels when you are suffering for longer than 2 weeks.
So as you recall my status was "Krista took her eyes off the Lord when suffering lingered on, much like Peter when he began to walk toward Jesus on the water and then sank."
Then, Mike wrote, "Jesus picked him up when Peter called. :) "
To which I commented, "Oh YES, you are so right...and in my discouragement, I had forgotten the end of the story! Thanks, honey!"
And what brought me back to my knees in heartfelt prayer, was Mike's realization, "Hey I think that's what Ricky prayed for everyone today. The message was from James 5:19-20 'My brothers, if one of you should wander from the truth and someone should bring him back, 20remember this: Whoever turns a sinner from the error of his way will save him from death and cover over a multitude of sins.' He (Pastor Ricky) prayed that EVERYONE there would bring someone back to the truth, and there you are. Isn't God good?"
So, as you can see, God answered Ricky's prayer in this family. Mike brought me back to the truth that God is there even in my suffering. And Nancy brought me back to the blog today, yay Nancy! And Lisa also encouraged my soul and even gave me a great tip that I'll share with you in another post about how to make online reading easier.
To top it all off, this evening, I received a wonderful message from someone I've never even met. What a blessing to read: "We've never met, but I want you to know that I believe God has given me a burden to pray for you and your family. You are always on my heart and in my prayers. I am often overwhelmed by the Love Jesus has for you. It is altogether wide, long, high and deep (Ephesians 3:18) May He continue to smile upon you and your family even in the rough patches. May His light continue to shine in darkness and may you have the peace which passes all understanding. Prayin' for you sister." That was four ways God used others to reach me today. I am feeling much more hopeful tonight.
I am also overwhelmed by the love of my brothers and sisters in Christ, as seen by this praying sister whom I've never met. Is that not incredible? And I know there are many, many, even some readers here, whom I've never met, yet who are praying for me now and who continue as I face an even greater battle ahead. THANK YOU, THANK YOU!
I hope you enjoyed today's post and please don't hesitate to contact me. God works through others as well. You all have been such a blessing, and I'd hate to lose touch just because I'm home.
Deuteronomy 31:8 "The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged."
Friday, October 17, 2008
Transitioning from Hospital Life to Home Life: Important Request
So much good news! My white cell count soared to 13.7 (13,700) up from 5.6 yesterday! So no more Nupagen shots are needed as my body has responded quite well. I only needed 3 shots of Nupagen this time. I remember 3 years ago needing a week's worth at least.
I started Procrit yesterday - no it's not a new nickname for myself. It's actually a once-a-week shot that stimulates your bone marrow to produce red blood cells. It must be working because those went from 8.3 to 8.7 in a day, where they had been falling over the last couple days. We shall see. As a going home gift, I'm receiving a transfusion of 1-unit of red blood that I requested because I just don't feel very good riding in the 8's. This should bring me to the high 9's. Still low, but my doctor doesn't want to take any risks with me.
And platelets, wow platelets! I went from 31k to 54k all by myself :) That's amazing to me and even to my doctor who won't say so after I asked him if he was amazed (at my blood results). His response? "I'm very, very, very, very pleased. VERY PLEASED." So then I asked him, "Then what amazes you?" He says, "The fact that you're smiling again." He's a nice guy, and I almost cried writing that, but come on! That is really not all that amazing is it? I smile most of the time...it was just a rough couple of weeks. When he left he shook my hand and said with all sincerity, "Thank you for getting better (my numbers) so quickly." I said, "Thank God!" as I pointed up. He stopped and turned back with a smile saying, "We will." But just so you know, he never knocked on wood laminate again.
Weird news...Dr. Wolliver said I caused him neurosis last night as he was realizing that my jaw pain could have been caused by something that they found in the blood cultures yesterday. It was a real slow grower and took all this time to come back, but I had an anaerobic organism in my blood stream that is found in the mouth normally...so it had gotten in through one of the lacerations in the roof of my mouth most likely. This organism actually causes jaw pain and headaches, and I've been under I.V. antibiotics for a week which probably helped, so they're sending me home with a penicillin-type antibiotic to be sure we get it all. Of course, it is one of those things that everyone has in their mouth, but doesn't usually get into the blood stream. Seems like the weird infections or strange side effects are reserved for me!
So I'm going home! Today! Late this afternoon, or early evening. Depending on Mike's schedule, food deliveries and my nap schedule. I just might be here until after dinner! (Actually, the plan is to be out of here by 5 pm so we can pick up Trevor at soccer on the way home and not miss the dinner delivery tonight!)
So you can be praying for me as I transition to home life. It won't be easy. I remember feeling the shock of going from round-the-clock care to NADA! It's a really strange feeling and I am sure it will be better this time around since we live in Santa Barbara now and are not isolated...lots of friends to fill the void should I need social support. But don't assume someone else is filling that role! Check in with me from time to time via email and ask how I'm doing and if I'd like company or help. Also, don't call...that's a funny request after just telling you I need you all! What I mean is, I would REALLY appreciate a note of encouragement in the mail (5069 Oleander Pl., Santa Barbara, CA 93111) and emails for the quick check-ins, but let me call you when I am able since I'll be recovering still and may be sleeping or homeschooling my kids.
I want you to know how VERY much we appreciate all the love and support we've received through your prayers, encouraging notes, visits, meals, shopping, childcare, etc. We couldn't have gone through this without you! We'll still be in need of these things as I regain my strength. Just because I'm returning home does not mean I'm "all better" now and can return to my normal pace of life. Things we still need help with are cleaning, occasional childcare such as we had been receiving as needed, general yard care, a cute short haircut for myself before my hair falls out. (I'm needing this and not wanting to pay my normal salon cut prices just to see it all fall out in a week or two, but the tangles I'm getting are atrocious!)
You won't hear from me every day from now on, but I'll update you when there is any news. Expect next week to be news as I go in for another bone marrow biopsy around Wednesday. One day next week (possibly Tuesday) we'll be going to UCLA for my consultation before waiting for a donor match. Oh, yes, you can pray for a donor match to come through before I ever need to come back here for another round of chemo. The doctors would want to do that to keep it in remission if I had to wait for a donor. Thanks again for sharing the burden, as well as the victory, in this journey!
Philippians 4:12-14 "I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength. Yet it was good of you to share in my troubles."
I started Procrit yesterday - no it's not a new nickname for myself. It's actually a once-a-week shot that stimulates your bone marrow to produce red blood cells. It must be working because those went from 8.3 to 8.7 in a day, where they had been falling over the last couple days. We shall see. As a going home gift, I'm receiving a transfusion of 1-unit of red blood that I requested because I just don't feel very good riding in the 8's. This should bring me to the high 9's. Still low, but my doctor doesn't want to take any risks with me.
And platelets, wow platelets! I went from 31k to 54k all by myself :) That's amazing to me and even to my doctor who won't say so after I asked him if he was amazed (at my blood results). His response? "I'm very, very, very, very pleased. VERY PLEASED." So then I asked him, "Then what amazes you?" He says, "The fact that you're smiling again." He's a nice guy, and I almost cried writing that, but come on! That is really not all that amazing is it? I smile most of the time...it was just a rough couple of weeks. When he left he shook my hand and said with all sincerity, "Thank you for getting better (my numbers) so quickly." I said, "Thank God!" as I pointed up. He stopped and turned back with a smile saying, "We will." But just so you know, he never knocked on wood laminate again.
Weird news...Dr. Wolliver said I caused him neurosis last night as he was realizing that my jaw pain could have been caused by something that they found in the blood cultures yesterday. It was a real slow grower and took all this time to come back, but I had an anaerobic organism in my blood stream that is found in the mouth normally...so it had gotten in through one of the lacerations in the roof of my mouth most likely. This organism actually causes jaw pain and headaches, and I've been under I.V. antibiotics for a week which probably helped, so they're sending me home with a penicillin-type antibiotic to be sure we get it all. Of course, it is one of those things that everyone has in their mouth, but doesn't usually get into the blood stream. Seems like the weird infections or strange side effects are reserved for me!
So I'm going home! Today! Late this afternoon, or early evening. Depending on Mike's schedule, food deliveries and my nap schedule. I just might be here until after dinner! (Actually, the plan is to be out of here by 5 pm so we can pick up Trevor at soccer on the way home and not miss the dinner delivery tonight!)
So you can be praying for me as I transition to home life. It won't be easy. I remember feeling the shock of going from round-the-clock care to NADA! It's a really strange feeling and I am sure it will be better this time around since we live in Santa Barbara now and are not isolated...lots of friends to fill the void should I need social support. But don't assume someone else is filling that role! Check in with me from time to time via email and ask how I'm doing and if I'd like company or help. Also, don't call...that's a funny request after just telling you I need you all! What I mean is, I would REALLY appreciate a note of encouragement in the mail (5069 Oleander Pl., Santa Barbara, CA 93111) and emails for the quick check-ins, but let me call you when I am able since I'll be recovering still and may be sleeping or homeschooling my kids.
I want you to know how VERY much we appreciate all the love and support we've received through your prayers, encouraging notes, visits, meals, shopping, childcare, etc. We couldn't have gone through this without you! We'll still be in need of these things as I regain my strength. Just because I'm returning home does not mean I'm "all better" now and can return to my normal pace of life. Things we still need help with are cleaning, occasional childcare such as we had been receiving as needed, general yard care, a cute short haircut for myself before my hair falls out. (I'm needing this and not wanting to pay my normal salon cut prices just to see it all fall out in a week or two, but the tangles I'm getting are atrocious!)
You won't hear from me every day from now on, but I'll update you when there is any news. Expect next week to be news as I go in for another bone marrow biopsy around Wednesday. One day next week (possibly Tuesday) we'll be going to UCLA for my consultation before waiting for a donor match. Oh, yes, you can pray for a donor match to come through before I ever need to come back here for another round of chemo. The doctors would want to do that to keep it in remission if I had to wait for a donor. Thanks again for sharing the burden, as well as the victory, in this journey!
Philippians 4:12-14 "I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength. Yet it was good of you to share in my troubles."
Thursday, October 16, 2008
Huge news...
White blood counts shot up to 5.6 (5,600)! Normal is 3.0 (3,000)! This means I'm no longer nuetropenic, that I can eat raw foods, and that I can go home! Told you it was huge news.
My red blood cells dropped to 8.1 and platelets are slowly climbing on their own at 31k. They don't want to do any transfusions because my marrow is doing such a good job making cells and there are risks that go along with transfusions. They'd also like to save those units for people who really need them. So today I'm going to get one more shot of Nupogen (for white blood cells) and a shot of Procrit (for stimulating the bone marrow to grow red blood cells). My bone pain was really bad late last night which made me know that my white blood cells would be good this morning! I don't look forward to it tonight though. I have been sleeping all morning catching up on what I couldn't get last night.
So, when can I go home?! My doctor said as early as tomorrow (Friday!) But they might wait until Saturday if my red blood drops again in the a.m. We shall see. They want to get me out of here now that my white blood cells are normal because I'm safer at home they told me. I said, "Have you been to my house?!" ha...
Here is the warning for you all...just because I'll be home does not mean I'll be back to my normal self and can just get up and go. I'll need lots of rest still and will be experiencing pain that can't be fixed by pushing a nurse's call button. But I'll get to eat my own raw foods and I'm grateful for that!
Here are some verses from Psalm 118 which blessed me:
1 Give thanks to the Lord, for he is good; his love endures forever...
5 In my anguish I cried to the Lord, and he answered by setting me free.
6 The Lord is with me; I will not be afraid. Wht can man do to me?
7 The Lord is with me; he is my helper...
13 I was pushed back and about to fall, but the Lord helped me.
14 The Lord is my strength and my song; has has been my salvation.
15 Shouts of joy and victory resound in the tents of the righteous; "The Lord's right hand has done might things!...
17 I will not die but live, and will proclaim what the Lord has done...
28 You are my God, and I will give you thanks; you are my God, and I will exalt you.
29 Give thanks to the Lord, for he is good; his love endures forever.
My red blood cells dropped to 8.1 and platelets are slowly climbing on their own at 31k. They don't want to do any transfusions because my marrow is doing such a good job making cells and there are risks that go along with transfusions. They'd also like to save those units for people who really need them. So today I'm going to get one more shot of Nupogen (for white blood cells) and a shot of Procrit (for stimulating the bone marrow to grow red blood cells). My bone pain was really bad late last night which made me know that my white blood cells would be good this morning! I don't look forward to it tonight though. I have been sleeping all morning catching up on what I couldn't get last night.
So, when can I go home?! My doctor said as early as tomorrow (Friday!) But they might wait until Saturday if my red blood drops again in the a.m. We shall see. They want to get me out of here now that my white blood cells are normal because I'm safer at home they told me. I said, "Have you been to my house?!" ha...
Here is the warning for you all...just because I'll be home does not mean I'll be back to my normal self and can just get up and go. I'll need lots of rest still and will be experiencing pain that can't be fixed by pushing a nurse's call button. But I'll get to eat my own raw foods and I'm grateful for that!
Here are some verses from Psalm 118 which blessed me:
1 Give thanks to the Lord, for he is good; his love endures forever...
5 In my anguish I cried to the Lord, and he answered by setting me free.
6 The Lord is with me; I will not be afraid. Wht can man do to me?
7 The Lord is with me; he is my helper...
13 I was pushed back and about to fall, but the Lord helped me.
14 The Lord is my strength and my song; has has been my salvation.
15 Shouts of joy and victory resound in the tents of the righteous; "The Lord's right hand has done might things!...
17 I will not die but live, and will proclaim what the Lord has done...
28 You are my God, and I will give you thanks; you are my God, and I will exalt you.
29 Give thanks to the Lord, for he is good; his love endures forever.
Wednesday, October 15, 2008
Click, click, click! (Updated due to sleepy head this morning!)
I had to edit the end of this post, because with my sleepy head this morning, it wasn't making the sense that I'd intended. So those of you who subscribed and read it already, would you mind re-reading the end so you can understand what I was trying to say? Thank you!
Yes, my friends, we're still clicking! My white blood cell count was a walloping 1.8 this morning! The doctor reads it "1800" -- while it was only .8 or "800" yesterday! That's a major improvement! My red blood cells say 8.9, but they'll come back again tomorrow. The platelets increased on their own from 19k to 23k, incredible!
So, things are looking really good to be leaving in a week from now. My mouth pain is even better this a.m. and I'm managing my headaches better, but I also sleep more because of that.
Business is doing well for those of you who were wondering about that. I'm exactly halfway to my goal and we're exactly halfway through the month! I had a new customer write in this morning out-of-the-blue and wants to get started so that was a blessing. If you are a customer of mine, and have been putting off your order until October, now is the time to re-order and I'd be glad to help you with that. I'm feeling well enough to handle things like this now, so don't hesitate to ask if you have any questions. I look forward to talking with you soon. Here's the current virtual Product Guide for your convenience.
Mike should really write this one today, but when I read the following Psalm, I thought, "that is what I did today, in a modern-style." My lamp did not go out last night and I woke up at 3:00 a.m. ready to go for the day. Started working at 5 a.m. on business which would benefit my family, selecting only the purest ingredients from the finest company of course. Well, this is what was on my mind - that with my Shaklee business, even from a hospital bed, I could be a Proverbs 31 wife!
10 [a] A wife of noble character who can find?
She is worth far more than rubies.
11 Her husband has full confidence in her
and lacks nothing of value.
12 She brings him good, not harm,
all the days of her life.
13 She selects wool and flax
and works with eager hands.
14 She is like the merchant ships,
bringing her food from afar.
15 She gets up while it is still dark;
she provides food for her family
and portions for her servant girls.
16 She considers a field and buys it;
out of her earnings she plants a vineyard.
17 She sets about her work vigorously;
her arms are strong for her tasks.
18 She sees that her trading is profitable,
and her lamp does not go out at night
Yes, my friends, we're still clicking! My white blood cell count was a walloping 1.8 this morning! The doctor reads it "1800" -- while it was only .8 or "800" yesterday! That's a major improvement! My red blood cells say 8.9, but they'll come back again tomorrow. The platelets increased on their own from 19k to 23k, incredible!
So, things are looking really good to be leaving in a week from now. My mouth pain is even better this a.m. and I'm managing my headaches better, but I also sleep more because of that.
Business is doing well for those of you who were wondering about that. I'm exactly halfway to my goal and we're exactly halfway through the month! I had a new customer write in this morning out-of-the-blue and wants to get started so that was a blessing. If you are a customer of mine, and have been putting off your order until October, now is the time to re-order and I'd be glad to help you with that. I'm feeling well enough to handle things like this now, so don't hesitate to ask if you have any questions. I look forward to talking with you soon. Here's the current virtual Product Guide for your convenience.
Mike should really write this one today, but when I read the following Psalm, I thought, "that is what I did today, in a modern-style." My lamp did not go out last night and I woke up at 3:00 a.m. ready to go for the day. Started working at 5 a.m. on business which would benefit my family, selecting only the purest ingredients from the finest company of course. Well, this is what was on my mind - that with my Shaklee business, even from a hospital bed, I could be a Proverbs 31 wife!
10 [a] A wife of noble character who can find?
She is worth far more than rubies.
11 Her husband has full confidence in her
and lacks nothing of value.
12 She brings him good, not harm,
all the days of her life.
13 She selects wool and flax
and works with eager hands.
14 She is like the merchant ships,
bringing her food from afar.
15 She gets up while it is still dark;
she provides food for her family
and portions for her servant girls.
16 She considers a field and buys it;
out of her earnings she plants a vineyard.
17 She sets about her work vigorously;
her arms are strong for her tasks.
18 She sees that her trading is profitable,
and her lamp does not go out at night
Tuesday, October 14, 2008
Things Are Starting to Click Up
Today it's officially been 3 weeks that I've been in the hospital! Despite my strength and security in the Lord, I was feeling sad and lonely last night...kind of hit me out of the blue. So you can pray for me on that end because here I am today and it's still there...a normal feeling, but not one I want to stick around for a week.
Here's some good news for you to praise God about today! My numbers have started making the climb back up! In the case of my red blood cells, they are doing it on their very own. I went from 8.9 two days ago, to 9.1 yesterday and today it was 9.7! My bone marrow is responding to the Nupogen, which means my white blood cells are making a come back at .8 today (yesterday was .6). My platelets didn't drop much overnight which was lovely of them. Yesterday they were 21K and today they were 19K. I never share Hematocrit with you because I'm not sure what it is, but it's been climbing steadily as well.
I also have had no fevers for over 24 hours! 98.7 this a.m. on the thermometer dial which means my song no longer applies. You know the song "Fever!" which is one of my favorite old standards? Come on, you know the one, Michael Buble remade it in recent years. "Fever in the morning, fever all through the night....FeVER!
I'm about to miss my deadline which is 9 a.m. so I'm going to make this short. My headaches are relentless and I even have one right now. And my mouth is just so painful, until my white blood cells return to fighting capacity. I need your prayers continually and look forward to getting out of here! I just saw an ad for a movie "The Secret Life of Bees" - this was a great book that I've recommended before for a fun read. If you read it and want to see this movie, but don't want to spend money on theater outings, wait for it to come out on DVD and we'll rent it and have a Secret Life of Bees movie night at my house in the future. We have a big screen projector instead of a TV so it's even better than going to the movies!
Philippians 1:18-26
Yes, and I will continue to rejoice, for I know that through your prayers and the help given by the Spirit of Jesus Christ, what has happened to me will turn out for my deliverance. I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body. Convinced of this, I know that I will remain, and I will continue with all of you for your progress and joy in the faith, so that through my being with you again your joy in Christ Jesus will overflow on account of me.
Here's some good news for you to praise God about today! My numbers have started making the climb back up! In the case of my red blood cells, they are doing it on their very own. I went from 8.9 two days ago, to 9.1 yesterday and today it was 9.7! My bone marrow is responding to the Nupogen, which means my white blood cells are making a come back at .8 today (yesterday was .6). My platelets didn't drop much overnight which was lovely of them. Yesterday they were 21K and today they were 19K. I never share Hematocrit with you because I'm not sure what it is, but it's been climbing steadily as well.
I also have had no fevers for over 24 hours! 98.7 this a.m. on the thermometer dial which means my song no longer applies. You know the song "Fever!" which is one of my favorite old standards? Come on, you know the one, Michael Buble remade it in recent years. "Fever in the morning, fever all through the night....FeVER!
I'm about to miss my deadline which is 9 a.m. so I'm going to make this short. My headaches are relentless and I even have one right now. And my mouth is just so painful, until my white blood cells return to fighting capacity. I need your prayers continually and look forward to getting out of here! I just saw an ad for a movie "The Secret Life of Bees" - this was a great book that I've recommended before for a fun read. If you read it and want to see this movie, but don't want to spend money on theater outings, wait for it to come out on DVD and we'll rent it and have a Secret Life of Bees movie night at my house in the future. We have a big screen projector instead of a TV so it's even better than going to the movies!
Philippians 1:18-26
Yes, and I will continue to rejoice, for I know that through your prayers and the help given by the Spirit of Jesus Christ, what has happened to me will turn out for my deliverance. I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body. Convinced of this, I know that I will remain, and I will continue with all of you for your progress and joy in the faith, so that through my being with you again your joy in Christ Jesus will overflow on account of me.
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