Merry Christmas to you all. This has been a wonderful Christmas. I was able to sing in all four of our Christmas Eve services and all three performances of our Christmas program on the 4th and 5th. God used my testimony to lead 3 people that I know of to Christ. That makes all of this worth it. Souls rescued from hell, spending eternity in heaven with Jesus....and me!!!! I also visited a man having a stem cell transplant in the bone marrow unit of Florida Hospital, IN MY SAME ROOM!!! That was weird. He is now home recuperating. It is hard to believe that it has been 9 months since my transplant. I am doing very well. My hair has grown back, all curly. And I mean curly like a poodle. I don't care, it's hair!!! Colored hair, but hair!!! No, I thought I could do the Jamie Lee Curtis thing, but I can't. With an 11 year old, I just couldn't give in to the gray.
My energy level is back and it is very rare for me to have to stop and rest because of fatigue. We are eagerly anticipating 2010, Michael Buble in March and Chattanooga in April for a Precept Women's Conference. I have never been, after 20 years in Precept, so I am excited. I go for all of my vaccinations in April and so far, my blood work has all been normal. I love that word, normal. I even rode Thunder Mountain at Magic Kingdom. Can you believe that? I never thought that would happen. But, God is not in the expected, now is He. He always surprises me.
We hope you all have a great rest of 2009 and may the Father of all, that blessed Creator Who sent His Son to give us abundant life, WAY more than we could ever ask or think.
Thank you for your prayers, please continue. Prayer changes lives, of that I know right well.

Ron and I went to our appointment with Dr. Edwards today and speaking for myself, I was a bit anxious. Our news could truly go either way. Cancer has a mind of its own. However, the bone marrow biopsy came back zero, meaning I am in complete remission. Yes, when I told my mom I cried. I had to ask Dr. Edwards to say it again because I just couldn't believe it. I think I was afraid to believe it. God has been so good to us throughout this whole journey. I am so glad He does not show us everything He is going to do. I, for one, could not take it. So, now I wait for my hair to grow back completely. I think I am going to go for the "Jamie Lee Curtis" look.....gray and all.
So, they will follow me for the next year with blood work every 9-10 weeks and I will keep taking my anti fungal and antibiotic for another month or two and all my vaccinations in April.
Thank you for praying for us so faithfully. Please continue as I am still healing from back surgery which, I think, has taken longer than I wanted due to the stem cell transplant. My energy is getting better all the time, but I still get tired in body before I get tired in mind.

I was speaking with a fellow "stem cell transplant" patient about recovering from all this and wondering when you know if this is as good as it gets, or will it just take more time. Having pins and rods in my back from T7-T12 is a lot of hardware. When will it feel "normal" and not like hardware? The answer is, I don't know, and may never know. But, I am so grateful to be walking and cancer free and allowed to be here on this earth;to be with my husband, kids and family for a while longer. Life is so precious and we take it for granted. I have even thought that God has left me on this earth to do simple things like ride my bike behind my son and encourage him as he takes turns, slowly, and doesn't fall, help my daughter sign up for her first college classes, swim in the pool and just talk with my oldest daughter, and help my youngest daughter find dance classes that teach her how to express herself through artful worship. Maybe life is lots of little things: loving my husband by just being here, being me and being his wife and my kids' mother and my parent's daughter and brothers' sister. I pray I will take more stock of the little things life has to offer and not just look at the big things as things of worth.
I pray your life takes on special meaning for YOU and you realize how much God loves you and how YOU are a part of HIS plan, even when we don't like HIS plan. It will always be for our good and HIS glory.
Love you all and keep praying,
Jenny

Great report

We had such a great report from Dr. Hadjenberg Thursday, we had to post a new blog. He said he couldn't say cure, because there IS no cure for Multiple Myeloma yet, but it is the best possible outcome. He also said there is no reason to think the bone marrow biopsy would not come back negative in July. So, I asked him what that meant. He said they would just check me every three months with blood work. No more chemo or radiation. No, I am not cured, but God has given me more time to spend with my family and friends and people who don't know Jesus yet.
I am at day +57 from transplant and doing great. I must still watch how many people I am around at a time and I of course wash my hands all the time. I also can't be around children who have recently had any vacination because it is a live virus. My immune system is now wiped clean, so I have to be very careful.
Thank you for all the prayers and cards and meals. My family and I could not have gotten through all this without you.
I am still waiting for my hair to grow back. It is only about 1/4 " long right now, but I have a great wig which makes me feel more normal out in public. I think I hate that the most.
The next update will probably be in July when I actualy HAVE the bone marrow biopsy.
Love to you all,
Ron and Jenny

Happy Easter to you all. I am doing very well. All my blood work is going well, numbers are up, so that is just like we want it. I can't tell you how good it is to be home. We figured out that 100 days after transplant is July 4th. What an Independence Day we are going to have. I am hoping for the trifusion catheter (port) to come out the first week of May. If my blood work continues on its present course, that should be feasible. The only side effect I am continuing to experience is a bit of nausea and fatigue. Friday I was so fatigued it was hard to write and hold the phone. Can you imagine being so tired? But, Saturday was much better and today is also better. The nurse told me I should expect that because I've been through a lot and my body has to recover. I guess I do forget because I truly don't feel bad. Once my hair grows back I will be one happy camper. I told Ron I feel like an old lady with my medicine boxes filled with pills for Sunday through Saturday and I have one for morning and evening!!! Ron fills them every Sunday so I am set for the week.
We go to the doctor's office Monday and Thursday next week and then I hope it will go to once a week instead of twice. If I go out, I must wear a mask, so, the only place I go is to the doctor's office. That is supposed to be for only two weeks, so we will see what the next week brings. Hopefully I will be allowed to go out a bit more. I just don't want to push it. Infection would be a very bad thing at this point. However, I hope to be at church next Sunday.
Thank you for all your cards and prayers and words of encouragement. Keep it up!!!

Thank you to all who prayed. I get to go home tomorrow because my counts are where they need to be. I also found out that I will be on antifungal, antivirul, and antibiotic for six months. I had no idea. The port should come out in the next 2-3 weeks and I am a very happy camper about that. I will also have to get all my "baby" shots again after a year. So, I can't say enough to all who have prayed and visited and encouraged me during my two week stay here. Ron is very happy too. We're on the count down now!!!

White Count

O.K. NOW is the time to pray specifically. My white count needs to go up so I can go home Monday. I have psyched myself up for two more sleeps and that will be Monday!!! My white count is now 0.1 and it has to move up. I am told that once they start going up, they go very quickly. Fast. I like fast. So, you guys pray out there!!!!
I am feeling fine. No fevers or infections and the nausea is all but gone. So, I am sitting here not feeling sick, but knowing that my blood work says it's dangerous to go home without any immunity building.
I am blessed to have had such an easy time of it. Thank you for making that possible through your prayers.

Here comes another update. It is now April 1st; day +6. No mouth sores yet, no fevers or infections. My counts went low enough to recieve the blood transfusion this morning. Now we watch for any signs of infection. This, they tell me, is the critical time. So, pray for today, tomorrow and Friday for no infection or fevers. They have procedures and meds to handle each situation that may come, and most will not hinder my going home on Monday. But, I have done really well so far and I'm praying that will continue. My nausea has been reduced significantly, and for that I am SO grateful. I am enjoying TV Land online to help pass the time.
The kids are doing fantastic; Anna even got a friend to color her hair......just a bit lighter, no drama.......I hope. I could only see it from the web cam so far.
Pray for Katherine as she takes the ACT on Saturday morning. This will be her second time and we will probably register her for it in June for her final try. A certain score enables her to be eligble for scholarship money for college.
Ron is getting tired. Juggling the kids and appointments and work and fixing the pool and visiting me and bringing me clean clothes and.......well, you get the picture. He never complains. I could learn from that!
Thanks for the prayers.....please keep them up.

Just thought I would send another update. I went into the bone marrow transplant unit on Monday, March 23rd. Got settled in to my room and around noon they began fluids and pre meds for the Melphlan. I began chewing ice at 4:30 and stopped at 9:30. The Melphlan doesn't take that long to go in, but it tends to create mouth sores and chewing ice helps prevent that. It is supposed to close the capillaries in your mouth so the mouth sores won't happen. They also give you a mouth rinse that you do four times a day, which is also supposed to ward off mouth sores. So, my ice chewing is over, but I am still doing the mouth rinse. Wednesday was a rest day so no meds or anything. I have been walking on the tread mill for about 15-20 minutes which helps with the boredom. Thursday my stem cells were injected back in; about 5 syringes full which took about 30 minutes. No side effects from that either. So, today is Day +2 from the transplant. We are praying for no side effects, like mouth sores, nausea, vomiting, diarrhea or high fevers. They watch for all of that and treat them as they come. They expect my white counts to come down today or tomorrow and then I will get a blood transfusion, which we also pray will have no side effects. If everything continues well, I will go home on Day +10, April 5th.
My white count today is 1.5 and Dr. Reddy expects it to drop again tomorrow. That is about it so far. I will let you know how things are going as the come. Thanks for all the prayers. That is the only thing that keeps me sane in here. Speaking of which, I think I will go and walk on the tread mill again.

Bitter Sweet!!

Ok, it has been a while since the latest update, not because we did not have any reports, but, we did not have any reports until today.
It is some of the best news so far, but make sure you read the whole update.

As Jack says on 24; "Previously on" Jenny's Update, we had just finished the 4 rounds of Revlimid and were getting ready to embark on the next phase of Velcade and Doxil. That was more potent than the Revlimid by a long shot. By the 3rd round I had started really feeling fatigued and a major hive like rash on my torso. By the end of January, I was feeling tired and ready to get off this stuff for a while.

That's when we had to go to Florida Hospital Walt Disney Cancer Institute (the one 5 minutes from our house). We had a sit down with Dr. John Edwards. He told us that we need to do a battery of tests to see where the treatment has taken us since last May but as far as he was concerned, it is time to do the Autologous Stem Cell Transplant.
This is where my own stem cells are brought to my blood, and filtered out, and frozen in order to put them back in. This is the safest of all of the stem cell and bone marrow transplants.

So, today, we met with him for over an hour and he went over all of the tests. Bottom line: Everything is normal as can be. The drugs worked. He said that the pathologist looked at the bone marrow biopsy slide and said that if she did not know that it came from a Multiple Myeloma patient, she would say it was a normal sample. But if she looked really really close, she could see a couple of cells that were atypical.
In the words of the doctor, "You are as close to Zero as you can be without being a Zero".

So....you probably have the same question as I did. "Why do I need to do the transplant?"

Well suffice it to say; it is the best time to "clear out ALL of the cancer cells and to infuse my own Stem Cells back into me" while I have the disease down to almost Zero. So, here is my next 2 months calendar:

February 26th & 27th: Go into the Florida Hospital for an overnight stay to have a port put in my chest. Receive Cytoxin. (This will make my hair fall out).

February 28 - March 8th: At home, Ron has to inject Neupogen 1 time a day for 8 days (this makes my bone marrow create massive amounts of stem cells so that they leak into my blood stream. They say that my bones will ache.

March 9th - March 13th: This is the week I go to the doctors office and they will run my blood through a machine that is programmed to remove the stem cells and the blood is then returned to me. Sort of a blood dialysis machine. This could take 1 to 4 days if everything goes well.

March 14th - March 22nd : Holiday...a week off.

March 23rd - April 10th: I enter the hospital, and for the first 2 days I receive Melphelan, the Multiple Myeloma cell killing drug. Then on day 3, I start the re-infusion of my stem cells.
The process takes almost 3 weeks in the hospital because my immune system is essentially nonexistant. They say I will feel like I have Strep Throat since the drug tears up my throat and makes me feel like I have a the flu.

Believe it or not, I can have visitors. It is an isolation area so don't come if you have the sniffles.
Also, no flowers or plants are allowed due to bacteria.

Then after I get home, I have to go 3 times a week for 2 weeks to make sure everything is okie dokie.

Thanks for all of the prayers and cards and encouraging words.

Jenny