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.