Friday, October 14, 2011

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 fiancĂ© 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 fiancĂ© 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.

Sunday, October 9, 2011

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

Wednesday, September 21, 2011

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!!

Thursday, August 18, 2011

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!

Wednesday, July 6, 2011

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!!

Tuesday, June 7, 2011

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!!

Thursday, June 2, 2011

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