Happy Holidays!

I can't believe Christmas has come and gone!  We had a wonderful Christmas .... our family was all together which was a great gift.

I have some news to share; however, I do so cautiously because in the past, we've experienced a few bumps in the road that have slowed/stopped progress.

My donor search coordinator has worked diligently and found cord blood units that are considered a safe match for me.  I was actually told that getting a transplant was probably not an option for me, so we starting looking for other avenues to keep my aggressive form of leukemia in remission.  I was all set to take part in a clinical trial and had an appointment on 1/23. 

Our prayers are getting answered!  The search coordinator notified us that cords have been found that are considered safe with my antibodies.  My appointment is now on 1/24 to start the transplant procedure!!   I really need your prayers more than ever now!!

PLEASE pray that I stay healthy until my appointment time.  Also I need prayer that the cord units will be safe and my body will accept the cells as my own.  This is my opportunity to be cured!!

One more thing ... my insurance will change to a different company effective 1/1/12.  I'm not sure what effects this will have, please pray this will be an easy transition and that Seattle will remain "in network".

God bless you all.

Hi all .... I hope this update finds you well!!  Not much going on in Omaha right now .... still just waiting for my donor to be found.  My counts have recovered some so I'm not so weak.

I wanted to thank all of you for coming out to register for the bone marrow registry.  You have NO idea how much that means to me .... one of you could give me the gift of life!!!  

There were two drives and they were both very successful!!  There are now approximately 450 new potential donors!!  That is awesome!  If you didn't make it to one of the drives, you can still sign up to be a donor at bethematch.org.  A kit is sent directly to your house, you simply swab your cheeks and return in the envelope provided.  There is an age restriction (18-60) ... because of this we actually turned many people away so the number registered at the drives would have been even higher.

Please remember my family and me in your prayers.  In addition to the prayers for a donor, it is important that I stay well until a donor can be found.  

I have great news that isn't health related!!  My youngest daughter, Ashley, is moving back to Omaha!!  She will actually be back before Thanksgiving!  I have a lot to be thankful for!!

Thanks for your support and concern!!  God bless you!!

Donor Drives this Weekend

Last week over 250 people joined the registry! Let's keep it going this weekend :) Please come to one of the donor drives and potentially save my life or someone's life! Join Be the Match

Omaha, NE:

Sunday, November 6, 2011

Faith-Westwood United Methodist Church

10am–1:30pm

4814 Oaks Lane (between 120^th and 132^nd at old “L” street), Omaha, NE

San Francisco, CA:
Saturday, November 5, 2011
St. Mary's Cathedral Event Center
9am–12pm
1111 Gough St.
**this is also a Team in Training event, Leukemia Lymphoma Society**
http://www.teamintraining.org/sf/firsttimehere/info

My Interview/ Bone Marrow Drive Details

Hi everyone,

Check out my interview from last night (Interview with Julie Cornell). 

We have exciting news—2 bone marrow drives are coming up. The first drive is this Sunday from 12–4pm, honoring a 7 yr old boy, Isaac Barchus, who has an extremely rare disease. He is 1/9 people in the WORLD diagnosed with Candle Syndrome and soon will be undergoing a transplant (Isaac's Story). The second drive is the following Sunday from 10am–1:30pm honoring me. Details are below.

October 30, 2011

Countryside Community Church

12–4pm

8787 Pacific Street, Omaha, NE

http://countrysideucc.org/

November 6, 2011

Faith-Westwood United Methodist Church

10am–1:30pm

4814 Oaks Lane (between 120^th and 132^nd at old “L” street), Omaha, NE

http://www.faithwestwood.com/

Please come to the bone marrow donor drive

And please share my story! Thanks :)

Hi everyone ... I am pleased to announce that I was interviewed by Julie Cornell of KETV again. This time Julie went with me to the doctor and interviewed my doctor about my need for a donor. (Doctors' Website) This will air Oct. 23, this Sunday, @10pm.

Good news, there is 1 bone marrow drive set up for Oct. 30th @ Countryside Church and a 2nd drive is in the works for the following week, Nov. 6. The 1st one was originally organized for a little boy in need of a transplant but he found a donor. The drive is still on for people like me!! You can sign up at no cost but of course they will always accept donations. Please see below for details.

Again, please watch the news this Sunday night, October 23rd at 10pm on KETV (Channel 7). The drive info is listed below:

Donor Drives:

October 30th
Where: Countryside Community Church, 8787 Pacific Street, Omaha, NE
Time: 12:00 to 4:00 pm

November 6th
Where: Faith Westwood United Methodist Church, 4814 Oaks Lane, Omaha, NE
Time: 10:00 am to 1:30 pm

Many people have asked if they could be tested. If you sign up for the registry then my search coordinator can look for potential donors within the "Be the Match" database. Please....I need a donor. Will you please come out and see if you could be a match for me and others in need?

Here is how it works. You will come to the drive and swab your cheek. From there, you cheek swab will go back to Be the Match and they will do analysis to determine your HLA type, criteria for donor matching. Your information will be in a secure database for search coordinators to explore for patients in need of a transplant. About 1 in 540 people will be called upon to donate. 3 links are attached to help you understand the process. Please save my life or someone's life!

Be the Match
Be the Match Newsletter
FAQ

My Story-sorry for the 3rd person :) My daughters wrote this blurb

Tammy Muth, an otherwise healthy 51-year old, was diagnosed with AML mid-March when she was admitted to the hospital with double pneumonia and two forms of influenza. After two frustrating months of going to the doctor trying to figure out why she kept getting sicker and sicker, Tammy finally got her answer. Most people would expect to find out their diagnosis through a physical examination or a test result but nope that is not how Tammy found out what was going on. It took her fiancé dragging her butt out of bed in the middle of the night, a trip to the ER, the swift and intelligent work of many doctors, six pints of blood (yes roughly 75% of the total volume of blood in a human body), intubation, four days of unconsciousness and Tammy’s relentless will to live to first save her life and second diagnose her with AML. After further testing, doctors told Tammy that she had a high-risk form of AML and needed a bone marrow transplant. A bone marrow transplant could significantly extend her life potentially 20+ years.

Fast forward to September and imagine receiving the letter from doctors saying they found a donor for you. Think about all the thoughts that would be going through your mind. Tammy felt like she had a new lease on life and was extremely enthusiastic about the grueling process ahead of her. She and her fiancé gladly packed up four large suitcases and caught a plane to Seattle, where Tammy’s transplant will take place. Once in Seattle, Tammy received her medical work-up itinerary and had a battery of tests to go through before the transplant. Friday before Labor Day weekend, Tammy was headed into the clinic for some routine blood transfusions and received a call from her doctor asking to talk to her immediately because he had some important things to discuss. The doctor came into the room and dropped the bomb: “Tammy, I am sorry but your donor is no longer medically safe and we suggest you go back to Omaha and wait to see if we can find another donor.”

Tammy is now back in Omaha waiting for the donor search to continue. She just finished her last round of chemotherapy and will almost certainly relapse soon without additional treatment. The donor search process is expensive (~$10K/potential donor) and very minimally covered by insurance. Tammy's search coordinator informed us that if we had more money we could speed up the process. We are reaching out to you because we are running out of time and resources and need help.

Last Round of Chemo

Hi everyone .... sorry you haven't heard from me for a while.  I had chemo week before last and I spent last week lying down.  This was my 4th and final round of chemo and for some reason my body had a reaction to it.  In addition to the common nausea, I had a fever all week that made my entire body ache.  I've had no energy.  I feel very blessed that when I got the induction and first 3 rounds of consolidation chemo, I didn't suffer like I did last week!

The donor search team in Seattle continues to look for a donor.  The antibodies I've developed is playing havoc in the success of finding a donor.  I learned, while in Seattle, that I have antibodies to 97% of the population.  That means we have to identify the 3% I will match and make sure they are signed up on the registry. (bethematch.org)  

Also I need help and I'm open to ideas!!  I am now 100% financially responsible for all donor searches.  Fortunately, I had a successful benefit given by my family and friends and the money raised will be given to the donor search team but it is literally "a drop in the bucket" compared to what I need.  Do any of you have any fundraising ideas that I can pursue?  I would really appreciate any feedback.  My daughter is also working on something related to fundraising so hopefully something will open up soon.

Thanks to all of you that have helped me already.  Please don't think I'm ungrateful .... I am in a race against time and need to find the donor as quickly as possible.

God bless you all!

Tammy

Back from Seattle

Good morning .... we've been back from Seattle for over a week and I wanted to update you on what's going on for now.  I visited my Omaha Oncologist on Monday and the game plan is to start my 4th round of consolidation chemo on Monday (9/26).

We've been wondering if I should consider visiting a "leukemia specialist" in Omaha so we addressed this with Dr. Shah.  He explained that Seattle is the ELITE and the treatment plan we are on was the plan of the Seattle experts.  That made us feel better.  So I start chemo on Monday while the donor search continues.  I don't really understand the complexity of matching the HLA however I do know that I continually mismatch in two different spots.  Alecia found a private company that types so she, Ashley and my cousin, Jim are being typed in those two crucial spots.  If a donor is not found .... for shame .... I did not just say that!!  BUT, let me just say there are clinical trials leukemia patients can take part in but that would be after all other treatments have been exhausted.

During the previous chemo rounds, we've found that the pre-nausea medication was the culprit of the severe rashes.  So they gone back to the "old school" treatment for me.  Please pray the doctors have come up with the right concoction and that it will work.  Getting sick after chemo is not fun!!

I feel good and am excited to decorate for fall!!   I know that I will be just fine so I need your prayers so we will know to follow God's plan.  Hopefully the "cure" is right around the corner unless God performed a miracle!!  :-)

Love to you all and God bless!!

Hello!!

I just wanted to touch base with everyone and let you guys know I am doing great!!  I go in to the doctor three times a week (Mon, Wed, Fri) for a complete blood count (CBC).  Although my numbers are low, they are holding their own after my last round of chemo.  My Oncologists are hopeful I don't have to have any more transfusions before the transplant.  


Jeff and I are getting ready to go to Seattle for the big day!  I am so excited!! We all are, we just want this behind us.  My first appointment is on August 30th.  At that time, I will meet with the doctors and begin a series of medical tests checking over my entire body.  After the tests, I will have high dose chemotherapy for about seven days and then the transplant!!  The transplant day is referred to as my "rebirth" day!  Yes.. TWO birthdays a year!!! 


As I've said before, going through something like this is definitely life changing!!  Fortunately I slept through the horrific days when my family had to experience what had to be one of their worst nightmares.  It appeared every time they heard news; it was always something a little worse …. I went into respiratory failure, I was on a ventilator for four days, diagnosed with acute myeloid leukemia and my only chance of survival is a bone marrow transplant topped with that I had a 50% chance of surviving through the first night!  God pulled me through all of it!  The search for my donor was started on April 28th and in July we were told that a donor (8 out of 10 match) was found.  At first I questioned whether or not this may the right donor!!  What??  Of course this is the right donor!!  Look what God has carried me through so far and I know He is by my side now ready to carry me through the transplant and recovery! 
I know many people have been praying for me and I have peace in my heart that everything will be just great!  All of this happened to me for a reason; the number one reason is the realization of how important God and family should be in my life.  I thank God for every day but most of all the beautiful family he has given me. 

Another reason I feel I’ve been “chosen” to go through this is because I have noticed there is a huge need for education on bone marrow donor registration and I want to help with this.  Bottom line, more donors are needed!!  So many people are misinformed on the actual bone marrow donation procedure therefore they shy away from signing up.  They couldn’t find a 10 out of 10 for me, who knows if more people were signed up to be donors, would they have found one?  I was having a discussion with my Oncologist last week and he said that most everyone would have a match if more people were signed up to be a donor.

This has now become my mission!   I am very thankful to the person in Europe who is willing to give me his bone marrow.  Essentially he is offering me the gift of life!  As soon as I am back from Seattle and able, I want to help start raise awareness regarding bone marrow donor registration.  I am one person in the middle of the United States so I’m not sure how I will get started but I am passionate and want to make a difference!

We will keep you updated on the progress in Seattle!  God bless you all!

Just saying hi...

Hi…it's been several days since I've updated my journal, but only because I really don't have any “new” news.

It seems that until I get my transplant I will continue my current cycle of having chemo and then subsequently building my counts back up only to then have chemo again. This is to keep the leukemia cells away. When having chemo, I have it for a week. I go in on Monday, Wednesday and Friday TWICE a day!! Then for the next three to four weeks my body fights to recover all my blood counts. I have a doctor's appointment every Monday and usually go in Wednesday and Friday for blood counts to make sure they are going in the right direction. Sometimes I can tell my counts are really low because I am really weak and/or dizzy which means an additional trip to the doctor (I almost said vet…chemo brain) and usually some units of blood or platelets.

My first round of chemo was in-patient and now I’ve had two rounds of consolidation chemo (out-patient). Yesterday the doctor said he can only give me four rounds otherwise it can really damage my organs. That means a "solution" needs to be found soon. I would prefer a bone marrow transplant (with a good match), but Dr. Shah said if that search is exhausted there are experimental procedures we could possibly be use. This is where your prayers are so very important!! I’ve been praying for a donor, but maybe God wants me to show everyone the success of an experimental procedure!! It’s in his hands!

I feel the need to share info about bone marrow donation. This procedure is something that might inconvenience you, but you will fully recover. The best part is that you’ve potentially saved someone’s life. I realize I’m 51, but I still feel I have a lot to accomplish in life so a donor or some procedure has to be found soon. If you sign up to be a donor, it may not help me, but there are many others waiting for transplants. Strangely enough, my niece's young son has a rare disease and will also require a bone marrow transplant (in a few years). That is why acting now and not putting this on your list of things to do is so important. You can find more information about becoming a donor at www.bethematch.org.

I truly mean it when I say I know I will make it through all this!! AND I will be there to help you all, should you need it!!! I can't give you my bone marrow or organs, but will help any way I can!!!

We’re all one big family and need to watch over each other!!

Love to you all!!

Thank you!

I had an amazing time this past Saturday at the benefit that was planned for me.  THANK YOU to all of those that helped pull that all together, those that have taken up/or given donations on my behalf and all of you that came out to support me!!!  I could not wait to see everyone!! I just didn't have as much time as I wanted to spend visiting with all of you.  You guys know that I am a hugger so not being able to hug was torture!!!!!!  As I said on Saturday, after this is all over we will have another party so that I can hug all of you!!

The benefit was a blessing because I responsible for 10% of total medical bills, I have not worked since mid-March and will be in Seattle at least four months if not longer so I have not had and will not have income for a while.  Disability should start in July.  Thank goodness!!  I have  been leaning on Jeff financially but when we go to Seattle ... he will have no income!!  I'm not telling you this for sympathy .... quite the contrary!!  I am trying to "put into words" how grateful I am for all of the support I have received from you!!  God didn't give me cancer but he allowed it to happen for a reason.  I may never know that reason but it has to be a good one!! 

What's going on medically with me?  I went to the doctor yesterday (Monday) and although my numbers are still low, they had increased.  I don't have to go back until Friday!!  I will have another complete blood count on Friday.  If the numbers have gone up enough for another round of chemo, I will start that on Monday.  Yuck!!!  That means we do this all over again.

I still need your prayers, they still haven't found a donor for me.  I pray they find a good donor match for me and we soon will be going to Seattle to start the process. 

Again, thanks for everything .... God bless you!!

Benefit is Just Around the Corner

Hi everyone,

I look forward to hopefully seeing ya'll this weekend and thank everyone for their generous donations. Unfortunately, my blood counts are still low and I hope I will be able to attend my benefit.

Details:

• Location: Millard Legion, 14334 U Street, Omaha, NE
• $10 donation at the door 
• Silent auction with great items to bid on
• Frog's Leap: magnum of cabernet sauvignon ($90 retail)
• Sequoia Grove: bottle of reserve cabernet sauvignon ($65 retail)
• Sawyer Cellars: 3 bottles of rose and 2 etched glasses ($65 retail)
• Opus One: 6 bottles of Overture ($420 retail)
• Nebraska football memorabilia
• Gift certificates from restaurants 
• Restaurant gift cards: La Casa, Applebees, Red Lobster, Outback, Olive Garden, Charlestons, Cheeseburger, Baja Grill, and more
• Candles, a Scensy warmer, wine bags, a watch, purse from Diva Girls, Gift card from Tuffy's, Husker Tickets to the opening game, 2 nights at Dana Farms, 2 tents at a Winery South of town (can't remember the name of the place), an afghan, Husker footballs, wine t-shirt and cool glass, oh there is so much stuff! 
• All you can eat
• Local bands

Dream from my Daughter's Friend

Hi Tammy,

I had a dream about you last night. Perhaps I should start over--confessing some night thoughts about my friend's mom could be misconstrued and we only met once. Though, I do feel closer to you than anyone else I've only met once. After all, at the time your new MBA graduate WAS trying to expose some things I need not mention. Hopefully you remember. On second thought, hopefully you forgot. Regardless, it was a quick ice-breaker. Or more accurately, it was like taking a blow torch to a snow cone that had already been dropped on sun-beaten sidewalk; there is no holding back when it comes to Alecia--I appreciate Alecia and that we are on the same brain wave in a lot of ways. And Ashley too for that matter. I would say more about Ashley, but I recognize how vexing her infatuation with me as well as my man presence is for her. Plus, I still need to provide her with a nice decoration for the hood of her car. She's happy to explain.

Clearly, I digress. Back to the message at hand. The dream. It's ok, people don't have to leave the room for you to read this; fortunately, or unfortunately, it's not that kind of dream. The dream stems from me having recently heard about this havoc your white blood cells are creating for you. By the way, before I continue, I want to send you and Alecia and Ashley and Tony my warmest wishes and best thoughts for your physical recovery and all of the emotional hills and valleys I can only imagine you are experiencing.So, the dream. I'll get through it eventually. In the dream there were several familiar faces--you, Alecia, Ashley, Tony, me--and a bunch of unfamiliar faces--little kids. Shut it Alecia, I'm not a perv, I'm not dreaming about little kids. But truly, these were very little kids, like the size of action figures, only completely functional and animated. Much like Lilliputians. At any rate, we all invaded this ranch house somewhere in an arid, desert-like rural area. Aside from a couple of saguaro cacti in front of the house, there were not any other neighbors. Immediately after entering the house we all hurriedly sought out our bedrooms like some ecstatic Jersey Shore or Real World contestants. Despite our overt enthusiasm for the new digs, the real reason we were all so excited was to see you. You were actually already at this house being cared for and we came to cheer you up and help however we could.

Now, of course, our stay at the house did not come without its challenges. In particular, attending to the little…fully functional…action figure-sized…kids. Like all energetic, curious, playful little kids, these varmints wanted to go outside to run around and giggle and just generally be kids. Soon enough, though, we found the little kids had discovered the alligator pond. Of course there's alligator pond in the middle of the rustic desert. I'm from Florida, what do you expect? Moving along. The uncontainable little kids kept falling in the alligator pond. One can't leave a little kid to fend for himself in an alligator pond. So I rescued the first fallen action figure. Then another Lilliputian fell in. With alligators swimming all about, trying to engulf the snack-sized little rascals, I jumped in again…and again…and again, rescuing the tick-turds one after the next. I'd pull them out, dry them off on shore, dry their tears, and send them one their way with a warning to stay away from the dangerous, petrifying alligator pond. As is often the case, the little minnows couldn't touch the stove just once, but had to repeat it a few times. But I just kept rescuing and kept reminding to avoid the danger. The number of incidents steadily declined until before I knew it I was drying off my last little kid. Each incident was very scary, very saddening. But all of those rescues were worth it with complete relief and inexplicable joy culminating in that final towel drying.

What I gather from this dream is rather straightforward. You have these innocent, miniature cells (the little kids) that are being bombarded by some dangerous conditions (toothy, snarling alligators). But with your lively demeanor and support of your family and friends and doctors and people who only meet you one time who are rooting you on, it may feel like a day at the alligator pond, but in the end you get dried off for the last time and you are safely on the shore.

All my love,
Josh (JA)

1 Week Post Consolidation Chemo

Hi all .... just checking in.  This hasn't been one of my better weeks.  I had chemo last week so my blood count is down.  I will continue to get weaker until my counts start to come back up.  There are more babysteps than I realized!  I have been in for a blood count every day this week.  My platelets should be in the 150,000 range, this morning mine was 3000!  That was after having platelets yesterday.  I had more platelets today so hopefully they will start to regrow. 

Another problem that I've been having is that my port is in an unusual position therefore they have to stick me several times before they get the needle into the port.  So for the smaller blood tests, they have been using my arm and today the nurse told me my vein blew!   YUCK!!!!  Don't tell me stuff like this.  I am a very strong person but I don't like to hear about veins, blood or needles!!

Otherwise I am doing great!!!  I want to thank all of my friends that stayed with me last week and plan to next week.  You can see by my platelet count, I need you here!!  Plus I like to talk!!  :-)

Also I want to thank you all for the inspirational messages you leave on Caring Bridge!  When I am house bound, Jeff and I run out of things to talk about!  Not really... I just like hearing from you!!

One more thank you and I'm done for now!!  Actually two!  Because of my finances, there are many people working on organizing a benefit and donation drive for me.  I can not tell you how much this means to me!!  Every time I'm notified that a donation has been made to the Tammy Muth Fund, I cry.  You are all sooooo wonderful and I can not wait until I can help you some day!  I pray that it will not be your health; I will be there for anything. I love you all!!!

Please Join Me at My Benefit

In order to help pay my mounting medical bills, a fundraiser is being hosted in my honor. Everyone is invited, please join us!

Details:

• Location: Millard Legion, 14334 U Street, Omaha, NE
• $10 donation at the door 
• Silent auction with great items to bid on
• Frog's Leap: magnum of cabernet sauvignon
• Sequoia Grove: bottle of wine
• Sawyer Cellars: 3 bottles of rose
• Nebraska football memorabilia
• All you can eat
• Local bands

Donations can be made through this website, by calling Great Western Bank (ph: 402.551.4310) and specify you would like to donate to the Tammy Muth Fund or they can be mailed to the below address:

Tammy Muth Fund
c/o Jacki Inman
18839 Edna Street
Omaha, NE 68136"

Welcome to my blog!

As a healthy fifty-one year old woman, I was shocked to find out that I have acute myeloid leukemia. I started getting sick at the end of January and just kept on getting rapidly worse. One night something urged me to get out of bed and go to the hospital. Because of this decision, I am alive today and my journey to recovery began. That Tuesday night became early Wednesday morning and by 9:00 a.m. that morning, I was on a ventilator, diagnosed with double pneumonia, influenza A and B and leukemia (confirmed by a bone marrow biopsy taken while I was on the ventilator). The Alegent doctors and nurses provided me with impeccable care and helped me recover to a point where I was able to start chemotherapy that following Monday. To me, chemotherapy felt like a breeze compared to all I had been through. With wonderful care, medical expertise, strong-will and God, I am now in remission. I have follow-up chemo while they search for a donor match. I will be getting my bone marrow transplant in Seattle and spending four months at the University of Washington because they are not only the best but they pioneered the allogeneic bone marrow transplant procedure. I look forward to spending many more years with my incredible family and friends.

With love,
Tammy