Bone Marrow Transplant news

Dear Friend, loved one, or soon-to-be friend or loved one,

As you may or may not know, Julie Mueller, a seamstress, bibliophile, fishing enthusiast, loving dog rescuer, and wonderful mother of one daughter and one Corgi, was recently diagnosed with Stage 3 Multiple Myeloma, an incurable, but treatable, form of bone cancer.

After months of misdiagnosis at other clinics, the incredible doctors at Moffitt Cancer Center spotted and removed a malignant softball-sized tumor off of her left knee. Since then, she has been undergoing high doses of chemotherapy to prevent any other kind of sports equipment-shaped tumors from growing out of her bones.

While to date, there are no footballs or frisbees under her skin, the chemo has taken a toll on her both physically and financially as the knee surgery and chemicals have left her completely unable to work. Now, with the hope of going into remission, Julie will be undergoing an autologous bone marrow transplant (BMT). While we are thinking positive, we know this will be a very long, very painful procedure that will leave her physically, emotionally, and financially exhausted.

We know this is not going to be an easy process. We know it’s not going to be fun. But we know we want to make sure it is the best experience it can be.

In order to ensure this, we are doing three things:

STEP ONE TO BEST BMT EXPERIENCE EVER: I (MIRANDA) AM MOVING TO FLORIDA

I, Miranda, Julie's daughter, am leaving my job and moving from Paris, France to Sarasota, Florida to be with my mother and to become her full-time caretaker during this 30-day journey.

STEP TWO TO BEST BMT EXPERIENCE EVER: JULIE, MIRANDA, AND FOXY ARE SHAVING THEIR HEADS TOGETHER!

Normally, the “Drain-o”-like chemicals would flow through her during the operation to kill all the bad cancer cells in her bone marrow, thereby killing her hair follicles in the process. Instead of waiting for the medication to take its toll, Julie is going to beat the meds to the punch and shave her head first! To show her solidarity, Miranda is also going to shave her head - 16 inches of it! - and donate it to Locks of Love. Foxy, Julie's corgi, who was unable to provide an eloquent reasoning other than "Awooo!", will be getting a full two inches of dog hair shaved off the top of her head as well. We imagine our favorite canine companion would want to be part of our group of cancer-free, hair-free ladies, too! Of course we will record the entire process and keep you updated throughout the process through our website on the Caring Bridge.

STEP THREE TO BEST BMT EXPERIENCE EVER: WE ARE ASKING YOU FOR HELP!

Nope. Not asking you to shave your head - don't worry! We are just asking you to make a small sacrifice of your own to support us during this process. If you make a tax-deductible monetary donation in any amount to our One-to-One fund through the Bone Marrow Organization
,

 http://bonemarrow.org/financial-assistance/one-to-one-funds/participants/julie-mueller/

 

 you will be helping Julie stay comfortable during and after the bone marrow transplant. With your help, she will be able to pay for:

• Co-pays and deductibles for medicines and doctor visits
• Outstanding medical bills
• Lodging pre- and post-operation
• Transportation to and from Moffitt Cancer Center (one and a half hours away from her home in Sarasota, FL)
• Grocery bills
• Cell phone bills
• A dog-walker (Foxy is part of this too!)
• Fun activities (cards/games/etc) to help us pass the time
• Many other practical, unpredictable expenses

We are hoping to raise at least $3,000 to pay the deductible and make ends meet during these tough few months. You will be helping our family enormously with any help you can provide.

Though we do not have a lot of money, we do have a lot of love, so after you donate, please keep in touch with us through our facebook and Blogger.com sites, listed below! We want to show you how much we appreciate your help and want to keep you with us as part of this process.

At the other end of this tunnel, Julie will have a new cancer-free body full of good stem cells and good love. Please help us get there!

Contact Julie at: jglienna@gmail.com

Contact Miranda at: mueller.miranda@gmail.com

Chemotherapy stuff

It's been a while since I've posted so just as a quick catch up:

1. Started on Revlamid 25 mg and Dexamethasome 40 mg in June 2012.  That brought my numbers down but the side effects from the steriods and Rev were just too much.  I was sick all the time and miserable with constant sweating, my face all puffed up, unable to see my ankle bones, headaches and real out of body experiences.  Then the Rev stopped working and my numbers started going back up again.
2. Stopped Revlamid and started on Velcade and dex but only 20 mg in November 2012.  Velcade is also a pretty miserable drug.  The nausea was horrible until I learned to control it and the injection sites left huge red sores that eventually turned purple. Otherwise, besides the headaches continuing (they did a brain scan which turned out normal) and a funny taste in my mouth all the time, it wasn't as bad as the Revlamid.  After a while I just couldn't take the steriods anymore so I reduced down to 5 mg and then stopped.  I will never take them again!!! 
3. In November 2012 I stopped over to the transplant department at Moffitt.  They went over all the details of a bone marrow transplant (BMT) and said that I was a good candidate for one.  Multiple Myeloma is not curable but it is treatable and BMT is one of the treatments!  They described myeloma as a lawn covered with weeds.  The Chemo drugs essentially mow down the weeds (ie, cancer cells) but the cancer keeps growing because of the roots.  The BMT will essentially apply pesticides to my "lawn" and kill off most of the weeds.  Eventually, the weeds will grow back.  So, because my daughter is young and I'm not ready to die, I said I would procede to BMT.
4. Three days of intensive testing for my BMT was scheduled for this week. They want to make sure you are totally healthy, or at least that you are treated for whatever shows up. There were 20 vials of blood, radioactive dye in my blood, pulmonary tests, xrays of my entire body and on and on.  I had a little meltdown on Tuesday and refused to do the rest of the tests but they just rescheduled them for the next day LOL.  Guess that's happened before.  The thing that I was worried about the most was the bone marrow biopsy. Last time I had the biopsy I was in a lot of pain. This time the pain is minimal. Mary Gale says they probably hit a nerve last time.
5. One thing that's been bothering me a lot has been my feet! It's a result of the Velcade but I'm developing neuropathy. It's hard to explain how it feels but I generally feel like my feet are made of cardboard or sandpaper. The skin on my feet is peeling off in little strips and they catch on the rug, dry up and hang on, or rip off unexpectedly -- very painful! I live in sox and lotion. My sister Jennifer said to use coconut butter so I'm going to check for that.

My next decision is whether to participate in the clinical trial from my transplant. Clinical trials are important because they help doctors treat people in the future. In this trial they want to blast me with two shots of melphalan (rather than just one) and a shot of Velcade (rather than none) and then for the next year I will have the Velcade once a week for 4 weeks and then 4 weeks off. So here's the problem. The point of having the transplant is so I can be off the chemotherapy, which I don't tolerate well. Most of the people I've talked with who have had a BMT do not have to be on follow up chemo at all. The clinical trial would have me on chemo for at least a year. The point is to keep my myeloma cells in remission but there is no guarantee. Nobody knows anything about how my body will react after the transplant and I have to decide before the transplant. It's complicated. I don't know how to decide.