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.

What happened to school?

Back in August of 2011 I decided to take my company's offer to pay tuition for me to go back to school.  Actually, I was pretty excited about sitting in a classroom again and seeing if I was up to the challenge. 

At first I was in a total fog.  Everyone had laptops and were looking at the powerpoints and I didn't even know that the powerpoints were important.  I also didn't know that the course outline and many of the other things I needed were online and as a result I barely passed my first exam.  Then I really got down to business and put myself into it.  I did better on the second exam and perfect scores on the assignments.  I was headed for a perfect lab notebook when I got my MRI back.  I brought my MRI results in to the professor and asked him to help me understand what was going on.  We went over it for about an hour; he was so kind. 

He said not to worry about the class, it was more important to get well.  I finally ended up with a WF (which means withdrawn failing) in the class but there was nothing I could do at all.  I've never failed a class in all my academic career but cancer does funny things to your life.  I think my plans to become a nurse will not come to fruition.  I don't think I'll be well enough to study or work and I don't think anyone would hire me even if I did complete it. 

With that WF I knew my life was really in the blender.

Detour to the ICU

The magnitude of this illness is beginning to sink in as I lay in the hospital for about a week after the surgery.  It seems that during the surgery I stopped breathing or something and they had trouble getting me going again so I ended up on a respirator in the ICU.  Every time my blood oxygen level dropped below 80 the machine would beep, the nurse would come into my room and tell me to take a deep breath.  Pretty soon I was able to do it without being reminded. After they took out the catheter (oh yes, all the indignities you can imagine) I had to get out of the bed which was designed with very high sides on the mattress and very high up off the ground.  About the third day in ICU the physical therapists came and, one on each arm, dragged me out of bed.  I really thought I was going to die but I didn't and I DID have to pee. 

Meanwhile, I'm pressing the pain button every few minutes...   finally they shipped me up to my room with a horrible sore throat, dry lips and puffy as hell.  After another three days up on the 5th floor I was able to go home.

Green beams of healing energy

Here's what I wrote to my friends that day:

Dear Friends,
well, life happens so fast, doesn't it? When I came back from Miranda's at Thanksgiving my knee really hurt so I went to the doctor who said it was a dislocated kneecap. I went for therapy in December and January but that didn't help. So then I got the shot in the knee but that didn't help either. The problem is that I cannot walk. I was working up until the other day but it hurt and I was limping bad, taking a few days off now and then to rest but it wasn't getting better and everyone at work was saying "what's wrong with you?" Finally he sent me for an MRI. We were both pretty surprised by that MRI outcome so my wonderful doctor sent me off to the oncologist.

The oncologist had me take a PET scan and a bone scan, said it was beyond him so off I went to Moffitt Cancer Center in Tampa. It seems I have some form of rare bone cancer; they are not sure where it started, but it's definitely attached to and eating through my lower femur (that's the thigh bone). Not a pretty picture and not something you would wish on your worst enemy, much less your friend. I can't walk because it's eaten through enough of my bone to cause the bone to break! Ugh! I have to sit around and study my microbiology and that's not easy when you're in pain! This is where pain pills come in and I'm taking a lot of them because, let me tell you, this hurts a lot!

Next Tuesday I go for my pre-op screening where they will decide if I'm healthy enough for surgery and then Wednesday I go for my biopsy. They will cut into my knee and take a little sample of the tumor. The pathologist will be right there to decide which kind of tumor it is. If it's beingn (we hope) then they will scrape off all they can, patch me up with some kind of bone cement and metal plates and after a few days of recovery, off I go. If it's not benign then it's malignant and they will staple me up and I will start chemotherapy and radiation. I don't want to think about that right now so I'm asking that everyone start sending me great big green beams of healing energy! Keep it up!

I'll let you know how things are going next week some time.
love,
Julie

That's pretty much what happened!  Well, of course it was not benign and it was malignant but it was not a sarcoma.  Since Dr. Letson is only the wizard of Sarcoma he shipped me off to the Hematological Oncology department.  There I met Dr. Baz. 

Dr. Letson visit 4-10-2012

With all the paperwork in hand I went up to see Dr. Letson along with my mom and Mary Gale.  It seemed like hours later but finally Dr. L came into the room along with two of his interns (one of whom was Dr. Alexander).  He said they had reviewed all of the films and xrays and, yes, it was a tumor.  They did not know what kind of tumor so they would have to do some surgery to take a biopsy.  If it turned out to be a sarcoma they would put a rod in my leg to stabilize it and close me back up.  If it was anything else, they would try to scrape off the tumor and patch me up.  Letson asked if I wanted "cadaver bone" or "cement" and of course I said cement.  Can you imagine having a dead person's bone attached to your bone??  Letson said the cadaver bone worked really well.  Yuckkk. 

We all went home thinking it was a piece of cake (or at least I did) and that they would scrape off whatever was growing and after a week or so I would be better and back to work.  LOL.  Boy was I wrong about that.  I didn't know what was ahead for me, that's for sure!

Moffitt Cancer Center - Sarcoma clinic

On 4/2/12, Dr. Sholi set me up for a PET scan and a bone scan and he called Moffitt for me and made the appointment.  They called that afternoon to schedule my trip up there to see the great and powerful wizard of sarcoma Dr. G Douglas Letson. 
I went and had the PET/Bone scan on 4/4/12.  They injected some radioactive dye into my vein and I had to sit there for an hour while it boiled all through me.  My vision became blurry, I was having some leg cramps and I was quite out of it but in the end it was all done.  They gave me a disk to take with me so the experts could review the results.
I was a walking zombie, just going through all the motions of everyday life.