Wednesday, December 31, 2008
The transplant manager spent a good deal of time with us explaining how things were going to go...ask Mike because it is a bit of a blur to me. As I recall, we will get word back on this biopsy soon and, based on the outcome, either be ordering the cord blood from Australia on Friday or going in for another treatment locally. So we're praying there is no more leukemia, as there wasn't 3 weeks ago when I had my other biopsy. You just never know what will show up in that time.
The cord blood coming from Australia takes 8-10 days to arrive, not because of postal delivery, but due to the stringent rules of the Australian governing agencies.
Originally I thought Mike would have to be there with me for the whole 6 weeks. Now we're hearing he only has to be there during the critical periods, 2 weeks in the middle and the 2 weeks at the end. That's good news for my kids' sake. We still need to hammer down some childcare for them during the time away.
Here's some good news for me...the doctor said that the side effects of the conditioning treatment, before receiving the stem cells, are the same as what you'd expect with the first round of chemo I received in September/October, and I have done very well with that (aside from the bumps in the road if you remember that far back). I will be receiving total-body radiation and super-high doses of chemotherapy this time and thought it must be worse feeling. He says no. Also the risks of the radiation causing breast cancer in 10 years is so much less than the risk of having leukemia recur without having the radiation.
So the most serious threat is graft vs. host disease. That is something that could show up within the first 3 months post-treatment. It's where the new cells that have been transplanted grow in you, but start attacking your own tissues as a foreign invader. Reminds me of lupus, and it's similar in how that feels, but much more dangerous. So be praying for me through that as the time comes. The ideal situation, we are told, is to have a little bit of graft vs. host disease, just a little, so that if there are any rogue leukemic cells the new immune system will attack and kill them, but then for the graft vs. host disease to go away. This would be the best situation and it is known to happen. Severity of GVH varies from mild skin rashes, achy joints and fatigue to death should it attack a vital organ. There is no predicting what will happen, except that they try to prevent it with immune suppressing drugs which is why I won't be able to be around groups of people for quite a few months.
I am asked all the time what the survival rate of patients with leukemia who get transplants. It sounds bad, but he told me 40% have long-term leukemia-free remissions. He said that was the average, but that I have a very favorable case and expect the best outcome. As far as the potential to have other cancers from the radiation, that is a possibility, but we have to cure the leukemia because the rate of survival for someone with untreated leukemia is 0% and would only live 6 months tops. I'm not trying to scare you, just letting you know why I have to get this thing done. Some of us just need to know the why...I'm one of them. Why am I doing this again? :)
On a happy note, I got a tour of the floor of the hospital I'll be staying at, including visiting an empty room and seeing all the gadgets they have. It'll be like I'm on a vacation with room service where you just call the kitchen and order what you'd like, WHEN you'd like it. That's quite different than filling out a menu, sending it with the nurse's aide, receiving your meals at a set time (usually not when you're hungry), and finding an entirely different meal than you ordered because someone submitted a different menu that they filled out for you (a real pet peeve of mine). The room is organized so neatly, the bed seemed nice with a thick mattress, the t.v. is a sweet flat screen, there is a nice little living room for visitors and I even have a bathtub (they won't let you take showers because of the potential for organisms in the piping to get airborne and cause lung infections. They have these super hepa filters in the ceiling and the place smells fresh to me, not like a hospital at all. They have a fairly decent cafeteria downstairs too. Parking is $11 to park in the structure below the hospital.
It's New Year's Eve today. What better way to ring in the new year with old friends and lots of laughs...HAPPY NEW YEAR!
Monday, December 29, 2008
Hi friends and family! I know it seems like "auld lang syne" since I wrote last, but it is almost New Year's and I had to wait in order to use that bad pun for the opener of today's post! Just kidding. I was really busy just simply enjoying my wonderful Christmas home with my family. See them there? I just love my family!
Well, if you are not on Facebook, then you missed the drama of the 11th hour answer to prayer which occurred on Christmas Eve at 11 a.m.! We had insurance companies, new and old, and a mediator trying to get the right person at those insurance companies to talk to the right people at UCLA. UCLA was holding back ordering the donor stem cells until they knew the new insurance (Aetna) was on board, but Aetna couldn't say anything until we were in their system which would be Jan. 2. UCLA felt that by Aetna not preparing anything to be ready to go on Jan. 2, that would delay it too much and I'd have to go in right after Christmas for an extra treatment to prevent the leukemia from returning. That would be hard on me plus it would delay the transplant another month. Well, long story short, on Dec. 24, the right people talked and we got word that it was a go and there would be no need for the delay or the extra treatment.
So the latest is that on Tuesday, Dec. 30 at 2:00 pm I have an appointment at UCLA to receive a bone marrow biopsy, a dreaded procedure because of the last one being so painful. Please pray for me on that end (no pun intended!) If the bone marrow comes back clear of any leukemic cells then everything will happen as planned for the beginning of Jan. (they'll order the stem cells on Jan. 2 for the transplant). If it comes back with leukemic cells we'll have to get treatment to remove it before going forward. So pray on that as well. We will also be going over the treatment plan with the doctor tomorrow. Should be an interesting day.
We'll let you know how it turns out! God bless you for your faithful prayers!
Tuesday, December 16, 2008
Here's the catch. It's Christmas. Then it's New Year's. Two holiday delays, then on January 1, our insurance changes to Aetna from Blue Cross. So tomorrow I have to fax over a document to request transition coverage to make sure I'm covered for the transplant. Pray that there are no slip-ups with the insurance companies and that there is no fight over who pays for this thing. The timing is so bad with the insurance changing, but it is out of our hands. On the brightside, we heard that the new plan is supposed to have better coverage than the old plan.
Please pray also for our financial provision in general...besides the unforeseen medical expenses we've already incurred, with a new calendar year we have to pay our deductible all over again. We're also still reeling from last year's mold fiasco for which we had to take a second out on our house for remediation. Thank God for his provisions thus far and for the great benefits Mike receives from work such as vacation, sick, personal time and flexible scheduling!
My business is doing well, but it will be very difficult to maintain it while I'm going through this difficult time. September through November saw wonderful growth, a 10-12% monthly increase, company-wide. For me, December is seeing an exepected slow down due to the busy time of this season anyway. So pray for a surge of activity for my business and for sustained energy for me to maintain it from a hospital bed. I made Director in September from the hospital bed, but I have no idea what to expect from the transplant and I know it may be harder than anything I've experienced before. Mike encouraged me not to give up because the income it has generated has been paying the medical bills and has kept us out of the hole. If you are interested in Shaklee's great products, I'm your girl ;) Just ring me (805) 722-5556 after 7 pm or on the weekend. Or visit my main website or my Vivix website or my Cinch Plan website .
Merry Christmas! Only 9 days left as I write this.
We sure have been enjoying the holiday season, have you? The lights, the music, the treats, the tree, the presents, the stockings, stories and traditions old and new -- this feels like the best Christmas ever! I hope you are taking the time out to reflect on the reason for this season, the birth of our savior Jesus Christ and what that means to you. I pray that you will find the joy that only Christ can truly bring.
O, the joy of that first Christmas morn,
When in my heart the Savior was born.
The spirit of Christmas is not in the giving;
Rather in new life given to each new believer,
As Christ is born and newly living.
When a new heart believes and mouth confesses!
He is risen once again by the power of faith, by the power of love,
This He who is Jesus.
Our stripes He has worn so the yoke would be easy and the burdens be light.
To the pit He descended and with Him our stripes.
With each proclamation of faith and of love the stripes are then healed,
And He's resurrected to Heaven's most glorious height.
I joyously share in His shame and His pain.
For I know I was dead, but new life's been given.
And on me He finds not a remnant of stain.
With new eyes I see the wise of the earth become Heaven's fool.
For Him an instrument, in His hand just a tool.
The first shall be last and the last shall be first.
I shall join together with those now who are first;
To celebrate the grandest of all Christmas morns;
When each heart that brought our Savior to life,
Will forever depart from this place of strife.
We shall enter His throne room, unleash His clenched hands.
Help Him up from the floor, upon bended knee He's been found.
We're all here our Lord Jesus, not one is left out!
All stripes have been healed and we're no longer bound.
To our knees we all fall, nothing else we could do.
Merry Christmas Christ Jesus, it's always been You!
O, the joy of that precious first Christmas morn;
When in our hearts, dear Savior, there You were born.
Wednesday, November 26, 2008
Also, remember last week I was supposed to go into UCLA for preliminary baseline testing of all sorts. Well, they were so booked that we were unable to get in. The good news is that they faxed the orders to my local doctor and we had them all done on Friday while I was in the hospital which was super convenient.
I stayed in the hospital until Monday, until my white blood cell count started building on their own which they did. If you recall this is the timing when your blood counts drop because I had the other chemo treatment the week before. So all this was sort of expected. I say sort of, because it's always surprising to me when I have been feeling so good to be suddenly low in the blood volume and therefore feel fatigued, weak and lightheaded.
The reason I didn't get a chance to update you is because I spilled water on my laptop while I was in the hospital over the weekend and it went kaput. But we have a friend, Jimmy Todd, who is VERY gifted by God to bring these things back to life! A computer healer :) He went in and scraped the corrosion off the transformer and voila it was a beauty again! This is the second time Jimmy has saved my bacon in this way (the first time I had dropped the thing and I still can't believe my Dell is working now). We really appreciate your generosity Jimmy!
I was given some materials about the transplant and insurance process which seems quite daunting. We need to call them to see what they cover and don't cover. Please pray for God's provision for our financial needs. I'm sure He will provide because I know Him to be a faithful and loving God.
I also need to call UCLA again and find out the status of the preliminary search. Who knows how quickly I'll be in there getting the trasnplant, but I have a feeling it will be sooner rather than later. It could be in the next 2 weeks or the next 2 months.
My mom and her husband Glen left yesterday in their RV - sad to see it drive away! We enjoyed their 5 week visit and wish they could have stayed for the holiday, but they had a sense of urgency due to the snow storm coming in Colorado. For Thanksgiving we had many offers and are pleased to stay local and enjoy the fellowship of our friends the Austins and Dalfornos. Thank you for your invites and your prayers and I hope you all have a wonderful Thanksgiving.
1 Chronicles 29:13 "Now, our God, we give you thanks, and praise your glorious name."
Thursday, November 13, 2008
I have new memories of precious servants at the hospital...please pray for my nurse's aide (God knows her name) who lost her 16 year old daughter in a tragic car accident two months ago. She and her family - husband and 3 other younger children - are all terribly heartbroken as you can imagine. Pray for their strength, their healing and their relationship with God and each other.
I also met Lolita, a dear woman of God who came to visit me as a stranger and left as a friend. She is there to meet anyone who needs someone to talk to or pray with, as she is an assistant Chaplain. I loved hearing about Lolita's passion for the Lord Jesus and her devotion to serving Him. She shared some exciting stories of God's favor in her church's ministry.
I reconnected with Hangama which was a pleasure. She's from Afghanistan and would like to go back some day to bring healthcare education to women and children, but not until it's more stable. Hangama brought intellectual stimulation to me as she's a very smart lady and loves to share her thoughts on the world and religion. Even though we disagree on many issues, she is gracious to listen to me as well, and we respect each other all the more.
After I got home from the hospital I got lots of hugs and kisses from my boys and we played a rousing game of Hearts to celebrate. After lunch, I accompanied my mom and Glen to my chiropractor's office so she could get her kinks out that she's lived with since her first triathlon last May. On the way home, I had them drive by the ocean to show off a little more Santa Barbara to Glen. We got out and took some photos of the amazing Pelican landing and watched a little bit of the skateboarders' craziness at Skater's Point, our local skaterboarding ramp park that sits across the bike path from the ocean. Here's a photo of me taking picture of those birds:
Ok, now for the great NEWS! Enough of this sightseeing and reminiscing stuff, right?!
UCLA called today and let me know...after a preliminary search of the bone marrow registry, there were 16 potential matches! 16! The woman in charge of my case says she's very experienced and that this is a VERY hopeful. She is just giving me a very premature phone call because she wants to keep me informed which was nice. She said there are about 5 potential matches from cord blood which is ideal. These are very preliminary. They don't even have data back on what size the doses are that these cord blood donations are...the size has to be right for my body size. However, she mentioned that they could increase the cells by growing them in the lab before injecting them into me. The preliminary search is just the first step. The donors have to be notified (if found), then more testing done on them before we find the perfect match. But with that many potentials, the likelihood is very high that this will happen sooner than later. She said that there are times when she does a preliminary search and there are no preliminary matches that come up. So 16 and 5 were high numbers to her and very encouraging news to us!
So now we get started on my own testing for my stem cell transplant. I need to go to UCLA next week for a full day to take blood tests, EKG, chest x-ray, pulmonary tests (breathing into a tube for measuring lung capacity) and maybe more that I've forgotten. So, perhaps a spend-the-night is in order from our L.A. friends - we shall see!
Thank you for your offers to stay with you when we're in Los Angeles by the way (you know who you are)! I found out today that the Tiverton House (UCLA's guest hotel for patients and their families) is where they want Mike and I to stay for 2 weeks after the transplant, when I'm an outpatient. Originally, I had thought they wanted Mike to stay there during the whole time I was in the hospital. Nope. He is allowed to stay in my room overnight in the hospital. But I imagine that sometimes he'd rather spend the night at a friend's house and commute to UCLA at the off-peak traffic times. We did that last time we were there and it only took 15 minutes to get to without traffic. Not sure how it will play out right now, but we're trying to look at all of our options.
Platelet and red blood donation in the L.A. area can be earmarked for me during that time and they do a good job organizing that once I'm there. We'll let you know more details when we get them.
Enjoy your weekend! And keep praying for the very perfect match! And we will continue to trust God when He promised me in Psalm 41, "Blessed is he who has regard for the weak; the LORD delivers him in times of trouble. The LORD will protect him and preserve his life; he will bless him in the land and not surrender him to the desire of his foes. The LORD will sustain him on his sickbed and restore him from his bed of illness." For those of you new to my blog, this is the verse the Lord gave me after I heard that I might have a relapse of leukemia and I prayed to Him for help. It's also the promise that has given my kids such a peace about this whole experience. Praise God!
Tuesday, November 11, 2008
Today, Day 2, was a GREAT day due to all the wonderful visitors that came and the fact that I didn't have any treatments to deal with. All of my day visitors got to enjoy the beautiful weather and views that my rooftop location provides on the gorgeous patio. First Emily came with, yes, M&Ms - she was definitely paying attention to my Facebook status! Thanks Emily...she also came with my favorite DVDs by Beth Moore, the most gifted Bible teacher to women that God has ever given. Then my husband and kids came for a nice lunch break and we played some roaring games of Hearts and Crazy 8's. Later, Pastors Troy, Drew and Andrew came by for a great visit on the patio where we chatted and they encouraged me in God's Word and prayed for me.
The verses that spoke to me the most today come from Psalm 73, which Andrew Valle shared with me today:
23 Nevertheless I am continually with You;
You hold me by my right hand.
24 You will guide me with Your counsel,
And afterward receive me to glory.
25 Whom have I in heaven but You?
And there is none upon earth that I desire besides You.
26 My flesh and my heart fail;
But God is the strength of my heart and my portion forever.
27 For indeed, those who are far from You shall perish;
You have destroyed all those who desert You for harlotry.
28 But it is good for me to draw near to God;
I have put my trust in the Lord GOD,
That I may declare all Your works.
Those verses meant a lot to me because it's just exactly how I feel. Even though my body is going to go through the ringer over the next several months, I know that God is my stronghold, the only thing that keeps me going and the One I will continue to praise no matter how tough this temporary experience gets.
I must say that through all the love I've been shown by you all, I've been able to experience just a taste of what Heaven must be like! Praise God for all His wonderful deeds - for keeping me so strong through this, for keeping me as healthy as possible, for helping my family and keeping them strong and healthy, and for all His provisions. He is a great God! You are great friends and family, whom God has used in taking care of us.
Speaking of that, if you have brought meals to our home in dishware you'd like back, please come back for a visit and take them home with you. Most of our meals came from my homeschooling community and boy, do you all know how to cook! YUM! We enjoyed every meal, the quick ones ordered out too, and how sweet you are to make your family favorites for us. A couple of meals came from others who hit the spot with an In-N-Out run. So thank you all for your generosity including the shopping list runs and even providing the groceries for us at times! It was an overwhelming feeling of love we had from you all and we thank God for you so much! Thanks for stepping up to His calling on your hearts. Ok, now for some pics of the day...
These photos are of the service dogs that come visit - the golden mixed breed's named Chico and the little white dog is Rambo. The kids love when they get to see the dogs that come around. The hillside view of the Mission is taken from the gorgeous patio I told you about. The sunset was unbelievable tonight and was taken in the final throes from my room window. Enjoy!
Thursday, November 6, 2008
This morning I went to see Dr. Wolliver. I found out my blood counts were excellent - hemoglobin is 11.4, white blood is 4.1 and platelets were 238k. That's great news and because of my healthy state, my UCLA doctor, Dr. Schiller, told my local oncologist that we can cut back on the dosage of the chemo I'm about to go back in for on Monday. So instead of 6 doses, I can receive 4. AND, usually I'd spend a week in the hospital for this, but I'm going to be able to stay just 3 days and then go home, being monitored 3x/week as an outpatient. This is GREAT news!
I have a lot of information coming at me about the bone marrow transplant, and all it entails. I posted yesterday about some of that. But there is so much more I want to tell you about. Some of you have expressed interest in donating blood and platelets when I need it AND I will! However, are you willing to go to UCLA to do so? It took us 2-2 1/2 hours to get there. I have instructions on how to do it and what it entails, like which medications to avoid taking prior to your donation. If you're interested in that and will be able to go to UCLA to do that in the future (when I'm down there as a patient), then email me and I'll send you the information you'll need.
We're going to be needing to be down at UCLA for 6-8 weeks, my husband staying at a UCLA Guest House or UCLA's Tiverton House. I had heard it was subsidized by UCLA, but nightly rates are still at least $139! We're waiting to find out if insurance covers these costs. Please pray that Blue Cross does.
I want the match to be found quickly, but then I picture myself away from my family during Christmas and think it may be that I'd rather have to wait a longer time. Then I remember that our insurance company is changing to another one in January and what a nightmare that could be so I hope for it be soon again. These things are beyond me and only God knows what's best...He is in control of it and I know whatever happens will be for the best because I love Him. Romans 8:28 says, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."
Yesterday I spent a little time taking photographs around town after taking Trevor and Adam to Trevor's casual soccer pick up game at the Mission. I think my blog needs a little color with some photos. When I started my blog my camera had been kaput and now I've got a new one to document life's special moments.
Wednesday, November 5, 2008
A day or two following the chemotherapy and/or radiation treatment, the transplant will occur. The bone marrow is infused into the patient intravenously in much the same way that any blood product is given. The transplant is not a surgical procedure. It takes place in the patient's room, not an operating room.
Patients are checked frequently for signs of fever, chills, hives and chest pains while the bone marrow is being infused. When the transplant is completed, the days and weeks of waiting begin.
The two to four weeks immediately following transplant are the most critical. The high-dose chemotherapy and/or radiation given to the patient during conditioning will have destroyed the patient's bone marrow, crippling the body's "immune" or defense system. As the patient waits for the transplanted bone marrow to migrate to the cavities of the large bones, set up housekeeping or "engraft," and begin producing normal blood cells, he or she will be very susceptible to infection and excessive bleeding. Multiple antibiotics and blood transfusions will be administered to the patient to help prevent and fight infection. Transfusions of platelets will be given to prevent bleeding. Allogeneic patients will receive additional medications to prevent and control graft-versus-host disease.
Extraordinary precautions will be taken to minimize the patient's exposure to viruses and bacteria. Visitors and hospital personnel will wash their hands with antiseptic soap and, in some cases, wear protective gowns, gloves and/or masks while in the patient's room. Fresh fruits, vegetables, plants and cut flowers will be prohibited in the patient's room since they often carry fungi and bacteria that pose a risk of infection. When leaving the room, the patient may wear a mask, gown and gloves as a barrier against bacteria and virus, and as a reminder to others that he or she is susceptible to infection. Blood samples will be taken daily to determine whether or not engraftment has occurred and to monitor organ function. When the transplanted bone marrow finally engrafts and begins producing normal blood cells, the patient will gradually be taken off the antibiotics, and blood and platelet transfusions will generally no longer be required. once the bone marrow is producing a sufficient number of healthy red blood cells, white blood cells and platelets, the patient will be discharged from the hospital, provided no other complications have developed. BMT patients typically spend four to eight weeks in the hospital.
WHAT A PATIENT FEELS DURING THE TRANSPLANT
A bone marrow transplant is a physically, emotionally, and psychologically taxing procedure for both the patient and family. A patient needs and should seek as much help as possible to cope with the experience. "Toughing it out" on your own is not the smartest way to cope with the transplant experience.
The bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it's like to cope with the symptoms not just for several days, but for several weeks. That approximates what a BMT patient experiences during hospitalization.
During this period the patient will feel very sick and weak. Walking, sitting up in bed for long periods of time, reading books, talking on the phone, visiting with friends or even watching TV may require more energy than the patient has to spare.
Complications can develop after a bone marrow transplant such as infection, bleeding, graft-versus-host disease, or liver disease, which can create additional discomfort. The pain, however, is usually controllable by medication. In addition, mouth sores can develop that make eating and swallowing uncomfortable. Temporary mental confusion sometimes occurs and can be quite frightening for the patient who may not realize it's only temporary. The medical staff will help the patient deal with these problems.
LEAVING THE HOSPITAL
After being discharged from the hospital, a patient continues recovery at home (or at lodging near the transplant center if the patient is from out of town) for two to four months. Patients usually cannot return to full-time work for up to six months after the transplant.
Though patients will be well enough to leave the hospital, their recovery will be far from over. For the first several weeks the patient may be too weak to do much more than sleep, sit up, and walk a bit around the house. Frequent visits to the hospital or associated clinic will be required to monitor the patient's progress, and to administer any medications and/or blood products needed. It can take six months or more from the day of transplant before a patient is ready to fully resume normal activities.
During this period, the patient's white blood cell counts are often too low to provide normal protection against the viruses and bacteria encountered in everyday life. Contact with the general public is therefore restricted. Crowded movie theaters, grocery stores, department stores, etc. are places recovering BMT patients avoid during their recuperation. Often patients will wear protective masks when venturing outside the home.
A patient will return to the hospital or clinic as an outpatient several times a week for monitoring, blood transfusions, and administration of other drugs as needed. Eventually, the patient becomes strong enough to resume a normal routine and to look forward to a productive, healthy life.
LIFE AFTER TRANSPLANT
It can take as long as a year for the new bone marrow to function normally. Patients are closely monitored during this time to identify any infections or complications that may develop.
Life after transplant can be both exhilarating and worrisome. On the one hand, it's exciting to be alive after being so close to death. Most patients find their quality of life improved after transplant.
Nonetheless, there is always the worry that relapse will occur. Furthermore, innocent statements or events can sometimes conjure up unpleasant memories of the transplant experience long after the patient has recovered. It can take a long time for the patient to come to grips with these difficulties.
IS IT WORTH IT?
Yes! For most patients contemplating a bone marrow transplant, the alternative is near-certain death. Despite the fact that the transplant can be a trying experience, most find that the pleasure that comes from being alive and healthy after the transplant is well worth the effort.
Wednesday, October 29, 2008
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!
P.S. Happy Birthday to Trevor, my youngest who turned 7 today!
Thursday, October 23, 2008
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
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
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
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
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
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!
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.
Monday, October 13, 2008
I can only sleep in 1 1/2 hour increments at night. Very frustrating. Partly it's due to pain, partly due to nurses having to change antibiotic bags on the IV and later in the a.m. doing blood draws, partly due to floating nurse's aides who didn't know to not take vitals because the nurses so kindly allow me to sleep by doing it when they do my blood draws. So, there I was not able to sleep until 1 or 1:30 a.m., woken up at 2 a.m. from pain, 3:30 a.m. pain, 4:30 a.m. vitals, 6 a.m. blood draws and pain, by 7 a.m. I was up for good.
So that's my night. I hope my day goes better today. My Doctor Wolliver is back from his week off and is hopefully going to help me get to the bottom of my intense mouth pain which is the root of all the head/neck/face/jaw pain I've been having.
22 Because of the LORD's great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.
24 I say to myself, "The LORD is my portion;
therefore I will wait for him."
This speaks to where I'm at this morning. If you missed my last post because you don't frequent the computer on the weekend, please don't miss it. Another reason I've kept this post short today.
Saturday, October 11, 2008
I just wanted to address something tonight that may be on some of your hearts. I have not always had this incredible feeling of being close with the Lord. I did when I first became a Christian because God revealed Himself to me through some powerful events. But, that's not everybody's story. Some people live their whole lives trying to experience a deeper fellowship with God, their Savior, but feel sort of left out of the whole thing despite their desire, their belief, their commitment to reading, praying, etc. I cry when I think of how many have ended up giving up on God, feeling like all their dedication is not worth the pain, and not feeling comforted by their God in their difficult circumstances or heartaches.
You need to know that after I had that feeling of being on fire for the Lord, walking and talking with Jesus, looking to Heaven, expecting Him to return any minute that I spent many years experiencing various hardships. We all go through those, but some of them caused me to be unforgiving and distrustful of people. Those hurts really got in the way of my relationship with the Lord. I kept doing all the things a Christian does when they believe the Word of God, but something was missing now with my Lord. I couldn't feel my spirit growing anymore, or my "relationship" with Jesus was somehow blocked.
I believe that during those MANY years, He was growing me in my faith among people who didn't exhibit a friendship with God, yet called themselves Christian, doing everything "right". Perhaps they felt just like me, disconnected, but wanting more or maybe they were content with where they were at. It didn't matter to me because that is where God called me to be for a time. Sometimes that kind of fellowship can be discouraging and it certainly didn't encourage me to connect to the Holy Spirit. I would encourage you to find others who have that spark of life in their spirit, who exhibit a character of having a personal relationship with Jesus, maybe someone who is on fire for God, maybe someone who makes you feel uncomfortable :) and learn from them. Attend things they attend, have them over for dinner and games, get to know them and talk about the Lord with them. You are sure to be encouraged in your own walk with the Lord.
Sometimes God allows dark times to strengthen our faith through a growth process. We can't exercise faith when you see Him acting all the time. Hebrews 11:1 says, "Now faith is being sure of what we hope for and certain of what we do not see."
At other times it was my own disappointment with God that blocked my relationship to Him. When I got diagnosed with lupus in 2001, it caused a whole change in my life plans. Not only did I feel miserable with no hope for it to change as it is considered a chronic illness, but no longer could I spend time in the sun, go to the beach, go hiking, or even my plans to go to the mission field. What organization would accept someone with health issues such as I had? I felt angry and depressed and couldn't feel God's presence then or His comfort. I was just mad.
Following Him in a way that has some sin in it will not get you that intimate feeling. For example, not being willing to let go of your plans vs. His plans for your life like in my own example above. It doesn't mean you can't be angry. I like how David in the Psalms often spoke honestly to God about his anger saying things like "My eyes are tired of looking for you," but he always said it in the context of getting back to faith, praising God for what He knows to be true, giving evidence from the past, often speaking of hope for the future. Some people are not comfortable expressing their anger with God, and that's not truly being yourself with Him.
So there are a lot of issues that can cause this disconnect in our spirit. I have been there. I know from experience that it can be a dark night or many dark years. In my case there were 7 bad years, SEVEN! It wasn't until I was diagnosed with leukemia in 2005 that my heart got right with God in such a way that I experienced true fellowship with Him in a real, tangible way. It was a gift to have the chemo back then because it did something to my memory and all that ugly unforgiveness left me. I can't remember bad feelings I had about the past. It's a tremendous freedom. Perhaps it wasn't really the chemo, but the altered perspective He gave me when facing death and coming back to life. It reminds me of the astronauts who spoke in the wonderful documentary "In the Shadow of the Moon" -- these people went to the moon and came back with a totally different perspective on the problems we face on Earth. (This is a must-see movie you can get on Netflix.) Once you face a certain level of mortality, it's the same thing. I'm a different person post-leukemia, healthier in all aspects, body, soul, spirit, mind. I wish it didn't take hardship to come to that place. If you have had severe disappointment, and feel disconnected with the Lord, give me a call and let's cry together. It won't always feel so badly and I'd like to personally encourage you in that. Email me at email@example.com or call 805-722-5556.
Friday, October 10, 2008
My nurse T. was wonderful today. I really enjoy getting to know all the nurses and call them all my "favorite," but there are a special handful that I call my short list favorites -- those nurses I would request to be MINE, if I know they're going to be on duty. They let you keep your nurse for 3 days in a row which is nice, especially when you just LOVE them. You short-list nurses reading this know who you are :)
Times of suffering causes us all to be closer to the Lord. Psalm 46:1-2 says, God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea." Even before I was a Christian, I prayed prayers with an honest desire to know if God was real - and He powerfully answered those prayers. He is so faithful, even when we are not!
So whether you believe a little or a lot, would you ask God for more faith as you pray for me that my white blood cells would make a miraculous jump higher this weekend?
Thank you for your prayers, and if you have never accepted Jesus as your Lord and Savior, all I ask is that you keep honestly, humbly seeking the truth. Ask God to show you. The one, true God always answers prayers that are in line with His will. Some day I'll share with you how I sought the Truth, asking things like "why am I here? There has to be more to this life than what I see." Those questions began for me when I was only 5 years old! I kept seeking throughout my life, wound up in the wrong places at times, but kept honestly seeking. I accepted Christ at the age of 21 through a series of events that the Lord led me through to draw me to Himself. The coolest part is that He was seeking me first! 1 John 4:19 says, "We love because he first loved us. " I'll save the juicy details of my story for a future post!
"You will seek me and find me when you seek me with all your heart." - Jeremiah 29:13
Thursday, October 9, 2008
A cheerful look brings joy to the heart,
and good news gives health to the bones.
That's the news of the day - there are no cells in the bone marrow whatsoever, goal achieved! The biopsy went really well. My doctor enjoyed the strings ensemble musical accompaniment I provided through www.pandora.com, so much that he mentioned he'd now like to get some speakers and use Pandora's free service to accompany all his procedures at his office. All he needs is his laptop, but I think he'd like to make it even nicer for his patients. Dr. Kass is the greatest! I'm glad he was the one filling in for my regular Dr. Wolliver, who is also wonderful - really this whole oncology team is the best - I'm on a winning team for sure.
My pain was under better control today. However, my hovering low-grade fever has decided to get higher and I'm now being treated on 2 different I.V. antibiotics while we wait 5 days for the blood cultures to come back on what kind of bug it is that is causing this.
Meanwhile, one answer to prayer came quickly today - they found HLA-typed platelets -- 2 bags in fact. Earlier this a.m. I received a transfusion of regular NON-HLA typed platelets b/c my platelets were 16K and after the transfusion (which usually boosts them 30K), my platelets dropped to 14K. My temperature has been a bit high today (up to 100.8), so they had to wait for my temperature to drop before I could receive the HLA-platelets! While I was writing this, my temp dropped to 99.9, so they're currently giving me one of the platelet bags! My kids are still sick at home (they sound horrible) and can't come visit, so pray for them too and for Mike not to get it!
I'm actually feeling better enough to do my own posting today, typing and all, yay! It was nice catching up with a few friends today via my hotel phone! :) I call the room my hotel because, this VIP room (as the nurses refer to it), has really nice hardwood looking floors, beige striped wallpaper, a nice window covering valance and nice shade that lets indirect light in, yet doesn't block my ocean view. I also have a nice sink next to my bed...it reminds me a little of a small french suite.
My appetite for the hospital's great food has been diminished. Not because the "muffin of the day" is misnamed, and should be called "muffin of the month", nor because of the limited choices of being on a NO RAW FOOD diet, but because of the intense mouth pain I have. So, I eat 1/4 to 1/2 of the food provided and can take no more! Then I do my mouth care and swish a lidocaine numbing solution around which calms it down. Then I add Shaklee's Cinch meal replacement shake which has a great protein-to-carb ratio plus 6 grams of fiber. So I'm still getting all I need nutritionally.
Speaking of Shaklee, I was so proud of my faithful husband who believes in me and our business so much he attended a Shaklee presentation tonight that I was supposed to have done for one of my customers. This is something we'd decided in September that he would come alongside me at my various meetings and stay for at least the first half hour to an hour to show support, and let people know what having a Shaklee business is like from a male's perspective. He loves the products as much as I do, and would like the guys to know Shaklee is definitely not just for ladies! When I went to the convention in New Orleans, I saw thousands of husband and wife teams. So, this is one way Mike would like to be a part of our business. Isn't he the best husband, EVER? Thanks honey!
Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. Let the word of Christ dwell in you richly as you teach and admonish one another with all wisdom, and as you sing psalms, hymns and spiritual songs with gratitude in your hearts to God. And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.
Wednesday, October 8, 2008
This really was a low week for me. I forgot how bad you can feel post-chemo. I've been having low-grade fevers, but thankfully no spikes. Continue praying that I don't get an infection. Right now, I have a need for HLA-typed platelets. It might take a couple of days to get and my platelets are at 24,000.
I'm supposed to get a bone marrow biopsy tomorrow.
My kids are sick right now with the cold that's going around, so I can't see them for a while. Mike's mom came up yesterday to help out until Saturday, and we both really appreciate that.
I'm so thankful for so many friends who love me... I have 210 facebook "friends" -- can you believe that y'all? (My 10-year-old requires me to put quotes around "friends" when talking about facebook, and will do finger quotes if I don't!) But you know that I really do love all my buds on facebook. I wish more of our friends would join, don't you?
Which leads me to my next announcement: I just quadrupled my cell phone bill in two weeks with 646 minutes over my allotment. YIKES! Ok, so here's what we do. Please call me on my hotel phone (805) 569-7262 room #25. I promise to answer if I feel good enough, but you can leave a message with the nurse if I don't answer. This will hopefully save me $600 a month!
I still get email, too. Even when I don't feel good, Mike tells me what is in my inbox.
Here's an appropriate verse for today:
This poor man called,
and the LORD heard him;
He saved him out of all his troubles.
Tuesday, October 7, 2008
Krista has had terrible pain today and is unable to make her normal post -- or even dictate it. So I (Mike) am going to write it for her.
Praise God for small mercies... the eye patch did the trick, and the moisturizers have helped ease the pain. In the eyes, at least. No more eye patch needed!
But, today brought on a new set of symptoms: mouth inflammation with blistering gums, and a migraine headache. Once again, there doesn't seem to be any relief for either of these. The inflammation has made it difficult for her to eat. The headache was so bad that when I saw her earlier, she could hardly hold her head up even though her eyes were able to open about half-way. They eventually gave her a CAT scan to check for bleeding in the brain -- the scan came out negative.
As the new painful trial began, Krista discovered that the power-supply to her laptop went out. Frustrated with this onslaught of problems with all her facilities for communication (eyes, mouth, computer) -- "The thief comes only to steal and kill and destroy; I (Jesus) have come that they may have life, and have it to the full." (John 10:10) -- she managed to get one last email out to the homeschooling list: does anyone have an extra power-supply? Within minutes of posting the request, Cheryl G. (without checking her email) felt like she should call Krista to find out how she was doing. Krista told her about her frustrations and Cheryl "happened" to have the right power-supply!
We don't believe in coincidences. This is just a small example of God demonstrating His love for Krista, even in the smallest of things. He cares about the big and small things in your life, too! He's just a prayer away. What will you trust Him for today?
I will be glad and rejoice in your love,
for you saw my affliction
and knew the anguish of my soul.
You have not handed me over to the enemy
but have set my feet in a spacious place.
Be merciful to me, O LORD, for I am in distress;
my eyes grow weak with sorrow,
my soul and my body with grief.
Monday, October 6, 2008
The doctor put numbing drops in my eyes which immediately helped them feel better, telling the doctor that it was a surface problem and not a problem behind the eye. Then he looked all over them with this and that and said, "If you picked your cornea with a pin, it would hurt, but your cornea looks like hundreds of pin pricks." Oh, so that is why it felt like razor blades in my eyes! What a relief that it is due to the chemo and is fixable and not due to an infection or chemical meningitis.
The solution is lots and lots of good eye drops and ointment, and covering one eye with a patch after putting the ointment in my eye. That seems to be helping so far, at least with the pain. Tomorrow I'll switch eyes, and keep doing this until it's healed. The uncovered eye will receive drops or ointment every half hour.
The other discomfort that has started is in my mouth - a mucositis from the chemo. Swollen cheeks and gums, pain and stinging, but no sores, thankfully. It is beginning to interfere with eating though so please pray that this doesn't get worse and just clears up miraculously.
I received this note from a friend of a friend who's young loved one is fighting a brain tumor. I wanted to share what she said with you because it's just how I feel about my own current battle. Here's what she said, "This trial has strengthened my conviction that a foundation of faith in anything other than Christ will not stand up to tribulations. It reminds me of a sermon my college pastor preached a few weeks ago on Matthew 7:24-27:
The Wise and Foolish Builders
"Therefore everyone who hears these words of mine and puts them into practice is like a wise man who built his house on the rock. The rain came down, the streams rose, and the winds blew and beat against that house; yet it did not fall, because it had its foundation on the rock. But everyone who hears these words of mine and does not put them into practice is like a foolish man who built his house on sand. The rain came down, the streams rose, and the winds blew and beat against that house, and it fell with a great crash."
The stark contrast between the consequences of the wise man who built his house on the rock and the fool who built his house on the sand is evident. The trials will come regardless of the foundation, but quality of the foundation will determine the outcome. Notice that the difference is between one who hears and does Christ's words, and one who merely hears and does nothing. Had I not constantly reminded myself of God's Word and changed my attitude and perspective accordingly, I would probably be an emotional and spiritual wreck now, questioning the faithfulness and sovereignty of God. So I want to ask, how do you face trials? What is your foundation built upon?"
That ends my friend's letter, but I pose to you a similar question... are you saved? Do you want to have that firm foundation that the Bible speaks about? I would love to talk with you about this if you're not sure. You never know when your foundation will be tested, but eventually it will.
Sunday, October 5, 2008
It's right next to the family room too which is convenient for my kids who are over there playing Pictionary right now. I can even hear them talking about it with my door open. If you're looking for me you'll just pass the nurses' station and head straight back.
My eyes have been closed all day and even now I type blindly - Mike will tell me how many errors I made on this blog before he corrects it for me and sends it out. I think I'm doing well, but who knows? The consensus seems to be that my eyes had been so severely dried out by the chemo that I got scratches on my corneas... these feel like razor blades int he eyes and I sent out prayer requests like crazy this morning. It improved in that as long as I keep my eyes closed it's not too bad, and when I open them it stings. I'm just going to have to wait patiently on the Lord for this one -- and He'll hear my cry.
Please pray for my mucositis - something that happens as a result of the chemo. It causes swelling and pain in my mouth, but I don't have blisters thank God. I am entering the low period and these thing are to be expected. I just forgot about it. God is good at erasing our memory of bad things so we don't feel apprehensive and can trust Him more easily, doing the hard things in life that we normally wouldn't choose.
I will be getting 2 units of blood this evening as I'm dipping lower on the hemoglobin. Oh and a crazy thing happened today where my blood pressure dropped really low... each day my doctors were giving me potassium because it was normal and they wanted to make sure it stayed normal, but then it was too high this a.m. 5.5 (vs. 5.1 which is high normal). It can affect your heart so they were very nervous even though I had no heart arrhythmia. So they wanted to inject Lasix - a diuretic that helps remove the excess potassium. I initially tried to refuse it, seeing that it would probably lower my low blood pressure and and figured if I just stopped taking potassium I could pee it out naturally and solve the problem. Well, the doctor felt it was too dangerous to be left to chance and gave it to me anyway. Guess what? My blood pressure dropped dangerously low, like 72/57 or something like that, and I felt horrible. They filled me with quick saline bags and had to do it a couple times, plus run my IV saline full strength and double speed. Seems to have improved, but boy, did I know my body in this case.
So I hope that this post is not too whiny for you, just giving you the low down on my difficult day, so you can pray specifically. We're still waiting for an ophthalmologist who come with her equipment, but we feel we know what the problem is now and just have to wait it out, maybe getting some numbing eye drops instead of pain medication.
God bless you folks and I can't wait to have visitors when I feel better again in my very own VIP room. I'll let you know when that is or you can call first. If I don't answer, it's because I'm too tired, so wait to hear back from me.
Let me know if you were able to go the Avacado Festival to register for the bone marrow registry - a great opportunity this weekend! Feel free to leave comments.
But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.
-- 1 Peter 4:13