Tuesday, September 30, 2008
Later Trevor's friend Luca, from soccer, brought Trevor to the pumpkin patch with his family, who bought him a pumpkin. Thanks so much Ziggy and Daniel! Trevor wanted to get one to make a pumpkin pie this weekend. He's been talking about pumpkin pie for his birthday too which is Oct. 30. And now I'm hungry.
Trevor is pretty determined to paint his bedroom this weekend too - He wants to make it a Swiss bedroom. I thought that would mean something I can do, like a white room with a red stripe across and one down, but nope. He wants to make a Switzerland scene...alps, buildings, a Swiss train! Well, Ziggy (Luca's mom)! We went to Switzerland last December, and his bedroom needs painted, and since you're from Switzerland and are a good painter of bedroom murals (I heard), would you be interested in helping little Trevor achieve his dreams for a Swiss bedroom? :) I can't even imagine where to begin, but apparently he's already moving stuff off his walls to prepare. LOL!
On the health front, it's amazing that my hemoglobin is still very stable at 10.2 as of this a.m.! I must still be producing my own healthy red blood cells. And even my platelets kept stable overnight and at last check were 55k. I received an HLA-donated platelet unit today just because it was earmarked for me if I needed it and was set to expire. It certainly doesn't hurt to get more because "normal" is at least 150k. I learned that in 1 week I will get another bone marrow biopsy to check to make sure we got all the leukemic cells. And another week to let the my bone marrow rebuild its numbers on its own - getting injections for white blood cell boosts to help. So I'm doing well and thank you for letting me rest today! I needed it. I'm definitely open for visitors on Wednesday as I'm all showered and rested :) I just ask you adhere to the visitor guidelines to protect me from infection and be sure to call first 722-5556.
Psalm 28:7 The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song.
Monday, September 29, 2008
I had my last treatment today of chemo. Tiredness is more since, I presume, it's damaging my mitochondria (those little cell energy powerhouses) and I can't wait to rebuild after I'm home with Shaklee's Vivix which actually repairs DNA damage and builds mitochondria in the cell. Go to www.shaklee.net/mikeandkristaenglish to learn more about how it works - it's awesome!
I am neutropenic (which means 0 white blood cells) so please don't visit if you're sick or if you have been around someone sick in your family until you're sure you don't have it. I appreciate the precautions you're taking for me when you visit by wearing the mask they provide outside the door and sanitizing your hands. We're hoping to breeze through here without any infections!
I'll be in here for 2-3 more weeks while my bone marrow rebuilds, and in 2 weeks I'll get another bone marrow biopsy to check to make sure we got all the leukemia cells that were there - I'm pretty hopeful as one might can tell.
Psalm 27:13-14 "I am still confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord."
Sunday, September 28, 2008
He said I did in fact catch it early because there were no circulating blasts in my blood stream. Circulating blasts? Well, that's just a fancy way of saying the leukemic cells were being blocked in the bone marrow and hadn't been released yet. It means that yes, I caught it nice and early AND that there is less of a burden on my body, i.e. I'm not as sick as I could be had I not noticed early. (Praise God!) It's a completely different experience from the first time I had this 3 years ago.
This time they are avoiding the harsh chemo called Idarubicin (sp?) to prevent unnecessary damage and avoid the typhlitis (deathly intestinal infection) I had last time. Also, they're treating me prophylacticly with oral antibiotics ahead of time to prevent any type of infection. And with my body in a healthy state with stabilized blood counts, by all appearances I'll breeze through it.
Praise God for how I was taking care of my body ahead of time between bouts with diet, Shaklee supplements and exercise. I'm excited about the future. The stem-cell transplant will bring me a cure, however I will probably go into early menopause due to the high dose chemo and radiation that really wipes you out before the transplant. You can pray for a miracle there because I don't really desire to be on hormone replacement therapy at my young age of 37 or 38. But, I'm thankful for life and health so whatever the Lord's will is I'm up for it.
Thanks for riding the wave with me and supporting our family in so many ways - meals are covered through October I believe, people are shopping for groceries for my husband as he gives them his list, offers to help clean, and make play dates for the kids when my husband needs a break to go into the office, and the soccer teams transporting the kids to practice and Monica and Bruce Stanton taking Adam to his drum lesson on Mondays to piggy back on their son's lesson. Not to mention your prayers, notes of encouragement, gifts and visits in the hospital. Life feels so normal, just as it should be and I praise God for each and every one of you and want you to know how much GOD LOVES YOU!
If you do not have a relationship with God through the grace and sacrificial gift of Jesus Christ, and desire to have the hope that I have and to be a part of this incredible family, by all means let me know and I'll go through the Scriptures with you that points you to Christ and his incredible love for you and how you can know him. Please email me and/or call and it would be a privilege to usher you into the Kingdom here on earth - why wait until it's too late, why wait until you are at the end of your life when you can have life to the full and peace and joy and freedom right NOW! My email is firstname.lastname@example.org and my phone is 805/722-5556.
I have been where you are in the past, hopeless, desiring a better life, knowing there is something better out there, and if you seek the Truth, God will reveal it to you through the Holy Spirit. For me, I knew there was more to this life than daily living (or surviving), and from an early age I kept seeking the Truth. And eventually the Holy Spirit led me to the Truth through a series of events, including reading the Bible given to me by a friend, wanting to have that peace and joy I saw in my friend Catherine Grant, having dreams that were from the Lord literally speaking to me, seeing some miraculous answers to prayers in my weak faith, and having a supernatural experience as I tested God in my immaturity - but he knew that is what I needed to believe. And everyone's story is different because God is a personal God, meeting you right where you are at, warts and all, if you'll just turn to Him and ask him the hard questions, honestly come before him, honestly seek the Truth, and He will care for you and show you the way to Himself.
"Here I am! I stand at the door and knock. If anyone hears my voice and opens the door, I will come in and eat with him, and he with me." Revelation 3:20 -- Is he knocking on the door of your heart these days? Answer it, let him in and repent. He loves you so much.
Finally I leave you with 1 Timothy 2:4 which says "...[God our savior], who wants all men to be saved and to come to a knowledge of the truth." -- The God of the Universe, who placed the stars in the sky, who named each of them and created you in His image to have a relationship with you and to use you to glorify His name, wants to have that relationship with you through His son Jesus and you can experience a freedom that you've never known.
Praying for you all this morning...God bless and enjoy True Life through His Son Jesus - don't put it off another day because you never know how many days you have left on this earth. Don't forget to contact me if the Holy Spirit is tugging at your heart today.
Saturday, September 27, 2008
A couple of years ago there was an elderly patient named Guadalupe who suffered from Lymphoma and later died. Every time anyone walked into her room, no matter how much she was suffering with fevers or whatever, she would look up and say, "You know Jesus loves you."
Eventually, Guadalupe was near the end of her life and she told my nurse friend, "I want you to know that Jesus is here in every room." You see, as long as Guadalupe was on 6th Central, where I am now, she had literally been in every room at some point. My nurse friend asked her, "Guadalupe, what do you mean?" To which Guadalupe replied, "I've been in every room," and looking at the 10x10 inch tiles on the ceiling, she pointed at them and said, "I have prayed a prayer for each person who will be in these rooms for each of those tiles, and I want you to know and to tell them, that their room is covered by Jesus."
Amen Guadalupe, and thank you for sharing that story with me tonight, you know who you are...with permission I'll gladly edit your name in. Guadalupe was a patient in the time after I was in here originally, and I have to say I'm having a WHOLE different experience than the last time. Prayer is powerful, keep it up on my behalf, and I look forward to sharing more stories of victorious Christian living through suffering in days to come. "You know Jesus loves you." and so do I...
Ephesians 3:12-13 says "In him and through faith in him we may approach God with freedom and confidence. I ask you, therefore, not to be discouraged because of my sufferings for you, which are your glory."
Hope I haven't already told you this, because I've noticed a wee bit of chemo brain where you forget things, so bear with me. My doctor loves that I was running this summer. I started off as a non-runner and got trained by a trainer who showed me through his book "The Everything Running Book" how to go from couch potato (not that I was) to a 5k in 3 months. This was a very slow building up and working on posture and breathing. As you start out walking 10 min, you build up 2 min. every other day until you're at 30 min. Then you start 2 min. running with the rest of the 30 min. walking, every other day adding 2 min. until your running time is 30 min. Then you do a 33 min, then a 36 and then a 39 min. run, before dropping back to 30 min. run. On the weekend you to do a harder run and a light run. So, I did that and because I went slow, my body had the time necessary to build up the cartilage so would you believe I never had 1 pain in my foot, ankles, shins or joints and because I was using Shaklee's products designed to rebuild muscle for athletes in training I never had an ounce of muscle pain! It was exhilarating seeing what my new healthy body could do! I loved improving each week as my body just seemed to know what it was doing and sort of took over, meaning it didn't feel HARD like if I had just gone out and started running off the bat.
My doctor, also said that it was the running that probably kept my leukemia in remission longer because when you do that kind of cardivascular excerise your body builds T-cells which are killer cells that attack cancer cells. So guess what? I was too busy to keep running with the schedule I had at the end of July and August, that I just couldn't fit my normal routine in. Turns out, after I stopped, fatigue increased and I started getting the symptoms of possible leukemia in mid to late August with just fatigue, then in September easy bruising and becoming pale (anemic). I was so healthy coming into this though that I was able to recognize these vague symptoms and head it off at the pass. My bone marrow was 50% healthy cells with 50 immature leukemic cells - incredible. Most people don't get diagnosed until they are 90-100% mature full blown leukemia. So you can see all that running paid off and I can't wait to get back to it again!
My doctor said there is a nicer hospital somewhere he's been at where they have treadmills in every room for their patients -- oh I wish we had that here! Maybe I could get a celebrity out there to pull some weight for me :) Don't you know those Divas would be able to have a treadmill in their room? LOL
So off to eat lunch now...I'm in a battle over the menus currently! I got them to change the menu to a regular menu because the soft menu is not necessary and has no fiber (it just has no raw foods on it). The reg. menu has fiber, but items I shouldn't have like fresh salads, so I just purposely don't select those, yet each new shift is scared when they see it so my trays get switched and they order me what they want and aye yie yie! It keeps going back and forth.
Praise God, I had a nice talk with my very good Dr. Wolliver about some supplement concerns - what would be good for me, what to stay away from and I liked his rationale. So, I can take certain things like B-Complex and VitalMag, but when I get through the treatments I can take my regular multivitamin (Vitalizer) and Vivix.
I have to stay away from Optiflora until my white cells are normalized after treatments. And I have to stay away from fish oils (OmegaGuard) of course b/c of my low platelets. So that was all kind of what I gathered anyway. It's just nice to have the doctor on the same team with my approach to build my body back to health once I get out of here. He's very supportive as he saw me 3 years ago and how I came back to full health with sound nutrition and taking care of my diet and exercise. Go team!
Waiting for my HLA-typed platelets now, it's not an emergency, but should be getting some hopefully today if they come in (I think they had to be flown in from somewhere else like AZ). See? Even you friends and family who live far away and want to do something you can help! Go to your local blood bank or whereever you would donate platelets and ask them for an appt. to donate platelets - tell them you'd like them HLA-typed for the bone marrow registry. (Do that whether or not you plan to register). That's what my doc said they do it like here so if you find out how to get your platelets HLA-typed where you are and it's different, I'm sorry!
Have a wonderful weekend! I'm waiting to hear how my boys did in their soccer matches today! You can click on their team blog on the list to the right to see photos of them in action and some good sports writing for the U7 team thanks to Mara!
Friday, September 26, 2008
Pray they'll allow me to take my Shaklee Herblax as opposed to Senokot which doesn't work for me, so I have to take high doses of the stuff, then it swings me into pain and the opposite problem, and then they have to give me the opposite meds to stop that problem (leaving details out, but you can guess).
I love my doctors, but they are just afraid of natural things when they don't know how it works, and have no experience on possible interactions and have a lot of experience doing the same old protocol which is easy for them.
I'm hoping to get on Shaklee's Medline webpage and do the homework for them so they can see what if any contraindications there are. I think once they do that I can put them at ease at working with me. Pray for my doctor's heart that way to be open into learning something. I know he's busy and I understand his perspective and I certainly don't want to be foolish and get in the way of my treatment.
This morning my hemoglobin dropped to 7, maybe lower, so I got pretty woozy, lighheaded, and weak. I'm already hooked up to oxygen and the irradiated red blood cell transfusion is being given right now which makes me feel better immediately.
God bless the nurses, I love the variety of personalities I receive, even the challenging ones. And, enjoy your beautiful Friday out there!!!
Your outpouring of love is spiritually tangible and if my spirit could be any higher I'd be touching Heaven right now!
My boys are joyful and smiling -- praise God
My hemoglobin is still rebuilding itself (healthy cells rebuilding while I've got leukemia!?) (this was yesterday)-- praise Him and don't worry when they will drop down as the chemo takes care of that eventually, but it was just another confirmation that I did catch this early and I was very healthy coming into - go ahead, praise Him.
My white blood cells are zero -- yes, praise God b/c that means the chemo is WORKING -- yes praise Him
I'd had a platelet transfusion earlier day before yesterday at 8:30 before the
surgery and they had gone from 30k before the surgery to 24k at 2 pm. They didn't check until the next a.m. at 6 a.m. and I was surprised they were stable at 60k! -- Praise Him
The hemoglobin will eventually go down due to the chemo (like this morning I need a RBC transfusion because they did go down to 7.8), that's ok - praise Him - it is working and He is faithful. I'm in the right place and the perfect time and He will get me through all the ups and downs.
My son's soccer team was named by the teammates and when they named it in early Sept. I thought, "No Fear? How do you use that?" Now, I have no fear and God is using this whole thing as a total ministry to show the LOVE of God through his people (that's you and my sisters and brothers at Church and elsewhere), to show the strength and hope that can only be found when you trust in Jesus as your Savior--and don't you know I am sharing with every nurse and doctor and technician that I am in contact with here. Would you believe (in
the past), the staff is so amazed by me (really God in me) that they introduce me to other patients that they know I can help? I'm sure that will happen again eventually. God is so, so, so GOOD! It is a privilege to be given these hardships, much like the persecuted hold an incredible privilege as they fellowship in the sufferings of Christ for His glory!
I hope that encourages you tonight and puts JOY in your heart as you contend with me in prayer and turn to God's Word and praise Him, rejoice in the challenges dear ones! 1 Peter 4:12-13: "Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed."
James 5:10-11 Brothers, as an example of patience in the face of suffering, take the prophets who spoke in the name of the Lord. As you know, we consider blessed those who have persevered. You have heard of Job's perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy."
I ask you Sisters and Brothers in Christ, to persevere and continue praying for us, even after the newness wears off, even if it seems impossible for it to continue (as we're in it for a long haul) and I know you're all so busy. I don't want your lives to be turned upside down because of my hardship, but to be aware that this is true life and you can be a part of that...because you will be amazed, and I can't wait to share with you, all the goodness of the Lord, all that God is going to do through this trial and ministry--yours and mine--
for His glory!
Thanks so much for reading!
Thursday, September 25, 2008
We proceeded to move to the couch so we could do some reading. We were learning about limericks and opened the poetry book and after learning their structure, the first example limerick went like this:
I'd rather have fingers than toes
I'd rather have ears than a nose;
And as for my hair
I'm glad it's all there
I'll be awfully sad when it goes!
- Gelett Burgess (1866-1951)
I could not have possibly planned that! See, God has a sense of humor! And He cares for us so much, He was meeting Adam right where he was at, cheering him up. Adam is the one that said, "That is just for you mom!" and he was smiling and then continued to memorize it on his own since he enjoyed it so much. What a sweet moment.
And here's another! Last night, I was trying to go to sleep, I left my Bible on the foot of my bed so I wouldn't have to reach for it the morning. I turned out the light (yanked the cord really hard), and turned to get comfortable on my side, when I accidentally kicked the Bible which fell between the matress and the foot of the bed. I hear this noise of machinery, hey the bed is rising, YIKES, I'm rising! Of course I couldn't see and it was all the way down there and I have cords to worry about. So, I pull the light cord and scramble gingerly to the foot of the bed, watching that I don't pull the I.V. out on the way to grab that Bible and stop the uplifting! I was pretty high before I caught it and said, "Lord, I don't think that's what you had in mind when you said you'd raise me from my sickbed!" Sweet fellowship with my Lord.
Thought you'd enjoy that! :)
Psalm 126 When the Lord brought back the captives to Zion, we were like men who dreamed. Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, "The Lord has done great things for them." The Lord has done great things for us and we are filled with joy. Restore our fortunes, O Lord, like streams in the Negev. Those who sow in tears will reap with songs of joy. He who goes out weeping, carrying seed to sow, will return with songs of joy, carrying sheaves with him.
I love this Psalm and it reminds me so much of my life - I felt like a captive to sickness for so long and then he restored me and my life has been filled with joy and laughter and song, and people have been amazed at the transformation in my life that the Lord has done. And even now, our tears are turning to joy already and we don't even have to wait until I'm fully recovered, isn't He a great God?!
They are doing really well by the way and seem so happy - laughing and smiling while they were here. Our whole family feels so loved by all of you!
Psalm 34:4-5 "I sought the Lord, and he answered me; he delivered me from all my fears. Those who look to him are radiant; their faces are never covered with shame."
How to contact me:
Via snail mail: My addy is 5069 Oleander Place, Santa Barbara, CA 93111 -- my family will deliver my mail to me.
Via phone: 805-722-5556 is my cell phone I'll call you back if you have to leave a message.
Of course, I'm on Facebook so you can catch me here too - most fun!
Ok, so here's what happened today. My hotel is awesome - I'm on the top floor with great views of Santa Barbara harbor and the mountains behind us! You would love this place, room service for breakfast, lunch and dinner!
Some good news: My blood counts stayed stable since last week - no dives. My spleen was not enlarged. And when they look at my bone marrow and see how many healthy cells there are vs. leukemic cells they found that I had 50% leukemic cells. Usually they see 90-100% leukemic cells once people get diagnosed. That was me LAST time! I am sure that, because I was so healthy over the last year since starting my Shaklee supplements that I knew what sick felt like and was able to catch it right away. Whereas last time I had this I was very unhealthy and couldn't tell I was that sick until it was almost too late. Also, when I was getting an echoardiogram (ultrasound of the heart), the technician said "My goodness, what perfect anatomy! (speaking of my heart!) - he said, "It allows me to get great images which I usually can only get in small children and young teen girls who are very thin." I thought that was pretty cool, like I've been restored from the inside out, friends!
Bad news: Yes, chocolate ice cream still melts when you put it next to a hot plate on a tray for a while. Hey that's all!
More info for those who want all the nitty gritty:
The doctor came in and gave me some lowdown. I'm in process to find a perfect match - key here, perfect! Please pray that I'll find that PERFECT match so I don't get Host-vs.-Graft Disease, a complication where the stem cells that come from a donor turn on your own tissues which can affect any part of your body. Oh, update-- they don't call it bone marrow transplant anymore - it's stem cell transplant.
The stem cell transplant is interesting - like a transfusion, not a surgery. It's replacing my immune cells with a donor's. The donor's cells act like a weapon to destroy any remaining leukemic cells if there are any or if any return.
The hard part: Getting through the first round without infection. Pray. Then, more chemo and then radiation trying to eliminate all cells in my body so I can accept the new and improved immune system (a donor's stem cells) -- the infection potential is the dangerous part - PRAY.
The great part: Everyone in the know seems delighted when they hear I'm having a stem cell transplant b/c it is SO successful - we're talking permanent CURE for leukemia and lupus. And now that I've tasted how HEALTHY feels for over the past year, I can't wait for what the Lord has in store for me after all this!
Tomorrow: Platelets transfusion, surgery to put in the Double Lumen Groshon (sounds like an olympic sport - hope I get a 10), then we begin chemo with Ara-C.
Visitors: I love visitors but I can only have healthy ones -- not even a sniffle, cough, sore throat, achiness, run down feeling, or even maybe I'm fighting something, but don't have it yet. And if you've been around sick children then you have to wait to visit me. I know you understand! It's just b/c my neutrophils are 0 even right now due to the leukemia. When you come, bring your SMILES, but if you have to cry that's ok, I'll cry with you - it's what friends are for. Also, you might want to check with the nurse's station first if I haven't talked to you ahead of time. I don't mind drop-ins, but they'll tell you where to wash your hands and if you have to wear a mask. Now, all that said, don't be afraid to visit!
WHAT YOU CAN DO:
1. PRAY - for me not to get an infection during this month and to not have pain from surgery and side effects from chemo. That I'll get some answers on which of my supplements I can take and which I need to avoid right now. For my kids to feel peace and to grow in their faith in the Lord. For my husband's strength to juggle his new challenges with work and being a single parent, as well as for all of them to stay so healthy.
2. DONATE BLOOD - I'm A+ and you can donate blood without earmarking it for me - it's too complicated to earmark b/c I need it when I need it and there are so many of you...they can't store it up like frozen dinner. If you're local call United Blood Services - in the phone book to go in and donate.
3. DONATE PLATELETS - You don't need to be any blood type to donate platelets to me. First call United Blood Services in the phone book to make an appt. - they'll go over what it entails and ask them if you can get HLA typed too b/c I need HLA-typed platelets. My doctor is running tomorrow at 5:30 a.m. with the Director of United Blood Services so he's going to "lobby" for me and see how we can get HLA-typing done for you guys. I'll update you on that. Everyone is in desperate need of platelets though!
4. REGISTER TO BE A BONE MARROW DONOR - When you call about platelets you'll ask them about this too unless I have more info otherwise.
At the end of my updates (this one is the longest ever!) you'll see some #s - that's my blood count for the day.
White Blood Count 2.4
So that's it -- I've been busy today so I'll just close asking you to read Psalm 41 and pray through it for me and trust the Lord is doing this in me!
I have received the word today that I do indeed have a relapse of leukemia and need to go into the hospital immediately to get started on treatments. I will be undergoing intensive chemotherapy and will be in the hospital for a month at first. Meanwhile I am getting hooked up with either UCLA or City of Hope to begin the process of looking for a bone marrow transplant donor that matches as I have no siblings. That process can take a few months which is why I need to begin chemotherapy to go into remission. The bone marrow transplant will be curative, not only of leukemia, but of my lupus as well.
None of this surprised my God though and He is right here with me so don't you worry! As soon as I heard the news late last week that I had to get a bone marrow biopsy Friday to rule out leukemia I turned to the Word of God, the Bible, and asked Him for help. Psalm 41 is what he gave me and I am standing on that in faith that He is going to restore me from my sickbed. Now, go look up Psalm 41 and be encouraged!
So pray for the details as we make plans on taking care of the children, as they are our priority and the joy of my life. I hate missing their soccer games and reading to them on the couch and hearing their insights and discoveries. My business can take care of itself, but I'm bummed as I had so many wonderful meetings planned this week, helping others, and a special visit from my wonderful mentors Pat & Don Simecka. If you have a chance to attend their meeting for me on Thursday please do and tell me all about it!
I will bring my laptop to the hospital and will update you on Facebook for now. Oh and if you are in the area I'm open for VISITS - I'll have nothing else to do but get caught up on writing all those thank you notes that are stored in my head! My day starts early so even if you pop in before work that is fine too :)
Talk to you soon!
Love in Christ,
Wednesday, September 24, 2008
"May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit." ~Romans 15:13