Showing posts with label Desmoid Tumor. Show all posts
Showing posts with label Desmoid Tumor. Show all posts

Friday, November 13, 2015

Day #12 of the Gratitude Challenge




Trials –

The two big trials in my life are the circumstances I was born/raised into and my Desmoid Tumors. I use both of these trials to inspire others. I hope my message of Don’t Give Up, Keep Fighting comes through in my writing and when I talk to others. I know without either of these trials in my life I would not be the person I am growing to be.

I am not sure I would ever say I am thankful for my tumors. I am thankful mine were able to be surgically removed, that I still have my mobility and I did not have to deal with Chemo/Radiation. Because I had these rare tumors I reevaluated my health and lifestyle. It started me on the path of recreating myself inside and out, something I do not think I would have started doing in my early 20’s otherwise. Most importantly it made me Think --- think about what I was putting inside my body, what my choices were doing to this planet and inspired me to make better ones.


It would be easy to give up / give in and it is normal to have those thoughts but all of us have to keep fighting.  Fighting for our own happiness, fighting for a better life, fighting for health, fighting to just keep our heads above water. 

Thursday, April 9, 2015

MRI -- Desmoid Tumor



6 month MRI 3 years after my last Desmoid Tumor

I have been dealing with these tumors for 7 long years. This is the first time scheduling got screwed up. Seems the person who handled scheduling 6 months ago didn't do something right. 

When I didn't receive any paper work or phones call I knew something wasn't right. I called the day before to be sure everything was still going to happen—I was assured everything was fine.

I got there and registration didn't have me in their computer. Got down to radiology and they didn't have me on their schedule. I called, the lady at the desk called and someone dropped the ball. I was moments from walking out of the door not to return this year when they talked me into staying in the city for 3 more hours to have my MRI done at a nearby hospital. By doing it this way I would have to wait until Thursday for my results by phone. I knew the waiting would not be fun.



My anxiety was way higher than normal and after thinking about it, this was my first time dealing with this without my anxiety meds.

I am terrified of those words no one wants to hear: Re occurrence and Surgery.

Surgery is scary, recovery is tough and all this would delay the reason I am out of work—having our first child. It is very frustrating.

Then the phone rang…..

Blah, Blah, Blah—finally the words came I was waiting for…No re occurrence shown! Plus areas where surgery has been done is finally healing!!

It’s a new record for me—3 years since last surgery and no re occurrence!!


I am thankful, excited, amazed and beyond happy!! 


Thursday, April 2, 2015

Time off


 1,200 calorie Diet

Since I am taking two months off from the IUI Fun, I have decided to get my weight back in check. I am back on my 1,200 calorie diet and have since lost 10lbs! I have a month left and hopefully I can make my goal of 10 more pounds!

It still amazing me how many more steps a day I take now that I’m not chained to a desk! It was a struggle to get 10,000 steps a day while working a desk job. I would take breaks to walk 3 flights of steps, walk to the farthest bathroom when needed and use my lunch time to walk around the block. Most days I barely got in the minimal 10,000 steps a day. Now that I am home I am far exceeding this goal! Office work was truly killing me—physically, mentally and emotionally.

MRI of 2015

My first annual MRI, marking 3 years since my last tumor, is next week. Of course, I am doing the usual second guessing every ache and pain. Grr!! I, like most with these tumors, live with pain every day. My pain is caused by my active lifestyle but because of nerve damage and muscle loss, I cannot tell where or why.  Meaning I can’t tell if it is deep pain, muscle pain, sciatic nerve pain and so on. I usually don’t think much about it, until close to my MRI appointment.



Easter is this weekend—can you believe it!
I planned the Easter Lunch Menu, sent out request to each family as to what they should bring and have been aggressively cleaning house to prepare. A Family Gathering and Spring Cleaning in one month keeps me motivated! I would take cleaning my house over a good day at the office any day!

Renovations

The list of Renovations for 2015 has been created and work will soon start! Can you believe we have lived here since October 2008, it is amazing to look back at all the work we have done.

Inside work to be done:

Putting in a standard washer/dryer complete with shelf behind and an antique mirror above! We will also be closing in the staircase to upstairs to help with the cooling of the space in the summer. I am hopeful we can also put a turn at the top of the stairs to open up the landing a little more. (plus add a custom baby gate because almost 2 year old Eli Joseph does not respect gravity.) The rest is just upkeep/management.
                                                         
                                                               Outside work:


We are taking out the circle drive we put in years ago—it is not functioning well and in the winter completely useless. Instead we are connecting our driveway to the in-laws driveway making a large circle. By doing this we can also fix the drainage/sloping issue which is causing flooding in the garage when it rains. The garages will also be getting siding—a project we started last year—with some paint on the doors and new lighting, they should come out looking amazing!

We also decided to move the kid play area to the empty space where the pool use to be. It is already landscaped around and with the addition of some well-placed trees for shade it should be a wonderful place to play! (with lots of sand to dig in too, which is what Keaton Michael and Ivy have been using the space for!)

In the side yard, where the play area is currently located, we are putting the hammock and hammock chair—I have been trying to find a place for them since we moved in!



So excited for all the changes! 

Friday, October 17, 2014

Desmoid Tumor FREE

MRI is CLEAR

For the first time in 6 years I have clear scans two years after a surgery! My next MRI will be in a year or after the birth of my first child. (No, I’m not pregnant yet!)

 It is an amazing feeling to be tumor free! There were times I didn't think I would ever get to this point. I had my doubts, I watched for signs of impending doom that weren't there, questioned every ache and pain but at last the scan is clear!

Dare I think this is over, they got it all and it won’t be back?

2008 is when my journey of tumor removal surgery started and that journey has ended now in 2014!

Throughout this journey I have gotten healthier and more conscious of what I expose my body to. I have got more physically active and I am taking charge of my well being. Not having an answer to what causes such a traumatic event opens your eyes to lots of possibilities forcing you to either give up or take charge.

I was fortunate in that all 3 of my desmoids tumors were removable surgically. I would never want to let this foreigner live inside of me, grabbing everything it can, taking over my body slowly. I never want to know the world of chemo and/or radiation. Once found I was eager to get all 3 out!

I put my body, myself and my family through a lot but hopefully it is paying off now.

Since they do not know what causes these tumors, although there are lots of speculation, the journey we are about to embark on is with unknown risk.

Getting pregnant may or may not cause my body to develop another tumor, but not getting pregnant can also result in another tumor. I have said it many times—I will not let this tumor decide my fate, the life I will have or what I cannot have.  


Happiness is something you decide, regardless of your life circumstance.
 

Friday, April 4, 2014

Clear and Unchanged


 Yesterday I had my 1st MRI of 2014. I wore my Desmoids Suck shirt for the occasion!


This year makes 2 years since my last surgery, 6 years since my first and 4 years since my third. Yeah, that’s right, all 3 of my tumors reoccurred at year 2. Unfortunately, I am really getting good at the 45min-1hr long MRI Scan, dealing with the injection half way through and finding my way around the building. I can even tell, based on the timing of the silence from the machine, if the techs are calling the doctor because something was spotted and reading the doctors expression when he walked in the room to tell me the results at my follow up appoint right after the scan.

He walked in Smiling…..




 My doctor, Dr. Wurtz at IU Health, promised me there were no secret “spots” he was watching and went on to say the MRI shows no changes since surgery!! I’ve waited 6 long years to hear that!

I have one more MRI scan scheduled for this year, in 6 months. Once I get the all clear for that one in October I am free to start pursuing pregnancy!!

Saturday, January 26, 2013

Going back to work...


In two days I will be going back to work after my third desmoid tumor surgery. This third surgery, I feel, has been easier to heal from. I suppose it’s because we caught it early and the tumor was small. The only surprise at home was when I burnt myself with the heating pad—I have a lot of nerve loss. My blister was about 3-4inches and right beside my incision. So, for a week now I have had to deal with that—keeping it covered and clean. I went back to the chiropractor last week and it was heaven! She really helped with all the after surgery pain I was having. This week I am dealing with the after surgery insomnia. I have had it with all my surgeries and I’m not sure why. It’s like I get my days and nights confused. I am sleepy all day then as soon as the sun goes down I am wide awake! After a few days of 3-4hrs of sleep I finally broke through and can now get to sleep around 11. It isn’t good sleep but it should get better after a few weeks!

So far 2013 is looking great for us, Duste and me. I am tumor free and we are changing our lifestyle for the best! We are determined to be healthier than ever!
Before the blister!

Saturday, January 19, 2013

In Duste's words....


Surgery 3..the longest daze

A saga of drugs blood and pain. By Duste Eggers.

It’s all a blur looking back, and yet it all happened so fast.  We, me, my dad and talisa, rushed to Indianapolis at the butt crack of dawn; my sweet girl quiet and brave all the while  I drove. I’m confused about it really.?! I was with her as long as I could be, in a tiny room waiting, just me and her and a parade of doctors’, nurses and the rest of the monkey squad. I wanted to hold her and protect her but couldn’t.                      

The queen nurse, she was the boss monster of the nurse patrol, at the last minute made talisa remove her belly ring, and take down her hair. She wasn’t happy about it either. She lied about the OTHER piercing…. That was a mistake to haunt us, or ME later.  But she looked so pretty and all the nurses drooled over her wild Farrah  Fawcett  fro that exploded from her bun. (Hair bun not bottom)

 Before they drug her off to hell, Talisa kissed me in front of everybody.  It was great; her lips soft and warm. Then she walked away and I was alone, cold and empty. I found my emotional support (dad) snoring so loud everybody in the waiting room was giggling like a group of girls scouts  on mating day at the zoo. I made the gorilla carry talisa’s luggage. It looked like we were camping.

We had to walk 100 miles from one waiting room to the next. So we hitched a ride with a passing camel. When gorilla (dad), me and our safari outback gear got on the back of the golf cart the front two wheels lifted off the ground.  We set up basecamp in waiting room 1 and went for the worst food I’ve ever had in my life. It was like a bad prison movie. I had the gray goo and dad had the brown. We talked about bullshit and thought about Talisa.

                              Later:

Doctor Wurtz interrupted my reading and eating at basecamp while dad was making friends with the Latin Kings. I guess our basecamp was in their turf. Yes, I and the gorilla invaded their turf.  But in all honesty it had the most comfortable chairs. Wurtz said it was good news not much muscle loss but they had to put a drain in. I was relieved.  Ten minutes later a pony express rider came and whisked me away. I left dad with his new friends and was golf carted away at the speed of 3. 

  Talisa was in the same room I left her in... And so was Queen Nurse she was growling and slobbering over a ring... a piercing, talisa’s OTHER piercing. She smacked it in my hand like a hi-five and made a wise crack that permanently burned my face red.  Meanwhile… Talisa was a drug induced mess. She was whining and pawing at me and pulling me close. She made me hold her and put her hair up and scratch her and ask the staff a series of ridiculous questions. (Not in that order)

   Finally we got up to her room and the flock of vultures’ descended upon her like flies.  They made me leave; I came back in any way they screeched. “OUT” I ignored them and told talisa I was off to find dad.  Thank god for those golf cart drivers.  I got lost, but they drove me around till we found dad.

Back at the room I ordered her lunch and me and dad went to the cafeteria for more prison goo. It was a rainbow of ooze that could have been anything. Dad had the white and I had a salad.  A week later talisas food came, delivered by the scarecrow from wizard of oz.  Sorry your foods so late I was looking for my brain.

She ate like a farm hand. I was starved, she was starved I was so glad to see her smile.  She was still high as a kite but last time I saw her she was living on mars. She slept for a long time and the day crept by.  

The Gift shop was closed. The pizza shop was closed. The sandwich shop was closed and at 1pm the prison cafeteria food turned the living to the walking dead and zombies don’t cook.  I knew it was few days until talisas food arrived. (It has to travel all the way down the yellow brick road after all.)  Dad and I went scavenging for food. Thinking fast I jumped into an elevator with a woman with a pizza. She was dressed in red and black and had loud rap music filling the air around her like strong perfume.   I smiled and asked for her phone number.  She wasn’t a pizza delivery girl.  But she was quite flattered in her hard as gun steel gang banger chick kind of way. She gave me a number and I gave her an apologetic explanation.

  Dad meanwhile made friends with a kind old sage of a woman. Thanks to her we avoided the zombies by traveling by an underground tunnel from I.U med to Riley. Where we found a McDonalds! I was a hero bringing my baby a sweet tea, she was so happy. The tunnels beneath the hospitals are secret and not for anyone. Built to transport the dead they are almost 100 years old. It was a 30 minute walk both ways, I was gone over an hour. For my poor sweet baby the time passed in the blink of an eye.

 We snoozed off and on, All of us napping like lazy cats off and on in the evening hours. The new year was coming at midnight, nobody seemed to care. We watched twilight zone and talisas roommate left . I watched Talisa’s drain from time to time. A drinking straw sized tube connected to a accordion of blood. Like a red slushy the accordion never played never expanded.  I should have thought this odd….. big mistake.

  Night in the city: we looked for snow and just found smog. The dirty city never got dark and I never got comfortable sleeping in the chair. Dad had a convenient nightmare flash back. He was yelling like a madman in his sleep. I banished him to the waiting room, Where he was quite comfortable and happy.  I found him on a cushy sofa with pillows blankets his own t.v bathroom shower and Minnie kitchen. All this luxury in a waiting room all of his own.

I was glad for the morning glad to bring my battered and bruised baby home. She kindly offered to share her breakfast with me. I ordered it at 6: 18 it arrived at 8:30, cold and as late as it could possibly be and as small as you could imagine. She ate a mouse sized biscuit and I had a kids sized box of cereal. (Mmmm frosted flakes and chocolate soy milk. )

 By ten o’clock I was looking for snacks. Desperately sniffing like a scavenger on the Serengeti.  I was a hyena ,my only goal to find something good for my sweet starving princess.  Locked away in the tower room 6623 of pain drugs and soon blood. Soon as I left they assaulted her. I was angry; suddenly the muffins I found didn’t seem so important. The doctor was removing her drain so she could go home. I was happy…….

Then I saw the blood. Her face was twisted with shock and alarm. The doctor was near panic. Blood poured from her drain. Blood ran like a river, fast warm making her bed a murder scene. I was concerned the doctor was alarmed at least a big gulp worth of blood flooded out from her drain that wasn’t draining because it was kinked. It was one last test of pain before we escaped. My baby my baby, carved up like a side of beef.  Hell we escaped from Hell. It felt like a prison escape. Like I pulled her from death row a heartbeat before they pulled the switch.  My dad went to get the car and I stood in the middle of the road waiving my hat, he got lost. It was stupid and embarrassing. But at least it was over…. Or so I thought.

I HAD NEVER BEEN SO HAPPY TO GET HER HOME IN MY LIFE.

Monday, January 7, 2013

A week later...


It’s been a week since my third desmoid tumor removal surgery. This tumor was the smallest one yet and recovery isn’t as severer as my first two. I also stuck to my surgery plan—which was to limit my pain med intake—and because of that have very few side effects. This week I have been doing a lot of sleeping and finding a waist band that doesn’t hurt has been a challenge.  

Duste has been awesome. She has taken such good care of me and has even rubbed my feet at 4am multiple times! (I’m still having muscle and joint pain) She puts up with my whining and griping like a pro! (However, I have been mostly whiny) She cuddles me when I want, watching movie after movie with me and is doing a pretty good job keeping up with the house.

 Every day I am reminded how lucky I am—it amazes me.  We are closer than any two people I know and keep getting closer. We are so connected and I know that no matter what happens in life we will always have each other. Not too many people can really say that and mean it. We have the type of relationship I dreamed about as a child; close, connected and committed. As I lay in bed, which I am doing a lot of lately, I look around and am amazed at the life we have made together. We are buying a beautiful home, a home I would have never dreamed we could have. It truly is amazing; our relationship and our life together. She makes me so happy, every minute of every day. The best part of this recovery is I get to spend it with Duste. I can never get enough time with her, every day all day is just not enough.

 Even with a rare disease, like Desmoid Tumors, I am the luckiest girl in the world!

Sunday, December 30, 2012

New Years Eve and Surgery #3


Tomorrow is New Year Eve and I will be in the hospital having surgery #3 to remove a desmoid tumor. It is still in basically the same place, hip area on my right leg. This time it is more on the back and side area. I have to admit I am a little nervous about what I am going to wake up to—vain or not I am worried about the way my butt is going to look. The good news it is fatty there and hopefully any indents will fill themselves in over time.

I am calm so far but if I remember last time correctly I was calm and the nerves didn’t start kicking in until the hospital. Sitting in that little room, so brightly lit for as early in the morning it is, waiting for them to walk me back to the operating room; that much waiting would have anyone’s nerves on edge. This time around I have anxiety meds so that should help. 

I feel like a prisoner on death row the night before surgery, having my last meal. I never know if I will have an appetite after surgery. So, the last few days leading up to the last night I have all my favorite things and anything I am craving. All diets go right out the window.  It’s crazy really. It’s not like I’m never going to eat again….

I also have a surgery hair style. I wear it up in a high, but tight, messy bun. This way it is out of the way the first few days when I am feeling the worse.  I don’t have to worry what it looks like when I am at the hospital or at home when people come to visit. That is the great thing about a messy bun; it is supposed to look that way, even after days of having it up.

So here I go again, maybe this time will be the last…..

Friday, December 14, 2012

Tumor, Desmoid Tumor


The pain comes and goes, my mobility slows. I have forgotten what it is like to need help. With winter comes ice, pay more attention to my feet, be careful not to slip. A fall could lead to another growth. Mobility is something you take for granted until it is taking from you.  My third tumor is growing, reaching out to destroy more muscle; as it grows too close to my hip bone. I will be glad when he is gone, before too much is taken from me.  

Typing a schedule of my medications so my honey can take care of me, keep up with when I get what.  Packing my hospital bag, but not for a perfect bundle, a girl or a boy. My stay won’t be so joyous but a miracle all the same. Everything the tumor touches; muscle and tissue must go as there is a 70% chance of recurrence right there where it grows.

Its Christmas time but no visions of sugar plums dance in my head, instead images of my body, damaged from yet another surgery. What will the result from this surgery look like, I wonder.

One foot in front of the other, one step at a time, shed myself of things I cannot change.

Let them fall to the floor like unwanted clothing that keeps my soul from breathing…..



Sunday, December 9, 2012

Prepping for Surgery—taking an active role!

First step—figure out how to save more money monthly because surgery is expensive and I need Duste to stay home and take care of me.

Phone/Internet—was paying near $63. I called company and explained I needed to lower my bill. The phone could not be lower as it is $25 so they gave the internet to me for half price. Saved $20.

              NetFlix/Newspaper—canceled both. Saved $15.59

              Cell Phone—cancelled Duste’s cell service for now. Saved $35

Cable—I did the same thing I did with the phone company. I got the bill lowered and now we are saving $52.


                                   Total Monthly Savings--$ 123!!! I call that success!

 Second Step—cook, cook, cook so I can have homemade prepared meals ready to go in the Freezer.

                       Post-Surgery Menu

                        Taco Soup—made with ground turkey
                   Beef veggie soup
                   Super Stuffing for baked taters
                 Meatloaf
                   Cheesy Sausage Casserole
                   Veggie Pizza

I cannot change the fact I have to have surgery but I can get myself, my life, my budget prepared for the inevitable.

Thursday, December 6, 2012

The day after the news....


My one allotted day of feeling sorry for myself has passed. I woke up this morning to a beautiful sunshiny day, took a deep breath and smiled! Shit happens and this is my shit and boy is it happening. I may very well have to deal with this the rest of my life but one day I just may get lucky and it won’t come back…I suppose I should live on the positive side of life. True the end result could be the same but I will be happier in the process so that makes it worth it! Life can suck, life can be unfair but life is also what you make it! No more lying on the couch feeling sorry for myself, my happiness is important to me and I am going to do every little thing I can to be happy every moment I can.  

Truth is life is too short, I learned this when I had so many family members pass. I hate that I have to spend so much of my time at work but like most things in life it is just temporary. All I can do is make the best of the things I cannot change; like work and my tumors.

So everyone put on a smile, take a deep breath and put one foot in front of the other trusting the path is still there if you can see it or not!

 

Wednesday, December 5, 2012

Another Desmoid Tumor


This is my 3rd tumor, 3rd surgery and the second time I have had a recurrences two years post-surgery, almost to the date. This is the second time I have felt great and been told I have another tumor.

All 3 of my tumors have felt different. The first one was a visible lump with stabbing pains and would cause my leg to hurt after too much activity. The second and third was an ongoing dull pain. With the second one I did have stiffness after sitting or standing for long periods. This 3rd one has been trickier. The pain is mostly always there and sometime gets worse when it is cold. I did notice these last few weeks however, my sciatic nerve has been bothering me in my lower back—which now makes since to be my tumor growing and pushing more on my nerve.

I try very hard to be healthy and active. I have battling these 20lbs since my thyroid slowed around 2 yrs ago. I walk miles with my dog, I see a personal trainer and I go to Pilate's boot camp once a week. I have also been dealing with Chronic Fatigue Syndrome for over 5+ years this plus the depression that picks up more in the winter does not make for a lot of motivation. But the good thing I got going for me is habit, once I get in a habit or routine I stick with it.  So that is the trick for me but it really isn’t paying off. I drag myself from work to work out, get home late, make dinner and go to sleep. Then I wake up and do it all over again—sitting through 8-9hrs of work feeling like I have taking a sleeping pill.  Did I mention I’m still in my 20’s? On a good note—Chronic Fatigue Syndrome doesn’t mean it’s every day—at least not for me,  so I get some good days and even sometimes a good week and those are the times I try to make the best of it!

This third tumor really has me thinking about my future and that is the hardest part, you can’t see past your hand when something like this happens. I have so many questions and no answers. All I can do is put one foot in front of the other and soldier on. Hope this fog clears and I can at least see the light at the end of the tunnel.

 

Tuesday, November 27, 2012

Desmoid Tumor check


In 1 week I have my MRI to see if there are any signs of Desmond or Dezzie the Desmoid Tumors. I would love to say it has completely escaped my mind till now but I would be lying. Because I have frequent pain in the area I wonder. I have alerted my massager and chiropractor if they ever feel anything to let me know. It is hard to know what is normal pain and what is tumor pain, especially when I very little feeling left in that area because of all the nerve damage. These scans are both a blessing and curse, depending on the outcome.

I feel great. I believe all my pain is normal for me. There is nothing like a reoccurring tumor to make you second guess yourself. I even had a dream about it—which is probably just because it is on my mind but what if it was a physic dream preparing me….oh the shadow of doubt; push away push away but it always seems to stay. 

I want to believe I am past this and I will be tumor free for the rest of my life. Doesn’t everyone? But we never know what is around the corner for any of us. So, until next Tuesday I am going to try not to think about it and when I do, I will chose to see the positive. That is all I can do.

Monday, August 13, 2012

Changes


Changes can be a good thing, changes give us a chance to take a deep breath and give our minds and soul and new start.

I recently had my house Feng Shuied. For the most part we were correct in paint choices and placement. With only a few things to change/add I got busy right away making list. I had the few things I could do now and a few things I could do later once we moved our living room to the new space. We only need to paint one full room; mostly our homework consisted of adding art work in the right places. We added a small fish tank in the entry way and a picture of a map. I am adding a shelf in the laundry room to have some bamboo with jade and emerald rocks. I need to hang some metal art work at the top of the basement stairs and some black and white art work in the dining room. I moved some of my crystals, added some statues, more house plants and plans of de-cluttering are in the works!

 I love the way positive changes make me feel—all fresh and new, moving in a new direction, the right direction!

I also found a new favorite store! It is called Inner Path Books. They have books, crystals, physics and classes! I seen a physic and was told once again I should pursue being a healer and open myself back up. She also said I was on the right path and this year is all about coming into myself, being ok with who I am and letting go. Shedding the old me that held on to all the pain from the past and looking at the negative. I am excited to become me; I am excited to see where this takes me.

I bought a pendulum and practicing with that every night.

 I am so lucky to have a loving partner that is open to let me explore!

 Next time I talk to a physic I think I will ask about my Desmoid Tumors but I think they are gone for good! Speaking of which I hear that Rosie O’Donnell’s girlfriend has be blessed with these as well, sad to say but this will be a good thing for the rest of us with this. She will bring a face to the media; talk of this rare disease will bring more research and maybe a cure. I feel I am cured, I feel good with little to no pain and I am in the best physical shape I have been in for awhile.  I would like to put this rare disease behind me—but I am only able to forget about it for 6 months at a time then reality comes back to me in the form of a MRI scan.

My favorite quote right now is:

                                Keep Trying
                                Keep Believing
                                Be Happy
                                Don’t get discouraged
                                Things will work out!

                                                                ~Gordon B Hinckley

Sunday, January 1, 2012

Yay! I had my last MRI for 2011 and it came back clear!! My doctor is very impressed with the results! We scheduled two more MRI’s for 2012 then we will go down to once a year for the next 3….

I have to say, the MRI wasn’t as bad this time. I listened to my Adel 21 CD and managed to hold real still (hard to do, trust me). They did the correct amount for the dye and I didn’t get sick! It was quick and easy—the techs were joking around calling me an MRI pro!
After the dr visit we had dinner and hit a few stores. I found a baby item I had been searching for and over all we had a good day!
I thought about what if—what if we got a bad result 3 days before Christmas. That would have been bad, real bad.

Negative thoughts often enter my mind, although I try to stop them, but when I can’t I just replace those thoughts with good ones.
I am sure I am in the clear now. I am sure this tumor is gone once and for all!

I continue with the personal training. It is a fight, a fight to get back what little muscle strength I can. 
I will continue the fight and the positive self talk and I look forward to what 2012 has in store me and my family! Good luck everyone and Happy New Year!!

Monday, December 12, 2011

Happy Holidays and other ramblings

 What a strange year it has been. 2011 had so much promise, so much potential. But if it is one thing I have learned this year it is, life cannot be predicted nor controlled, no matter how hard you try or how many plans you make.
I have started a Reflection Journal this month. Each night I write three positive things that have happened that day. Sometime these things come easily other days it is a struggle to come up with three. The point is to start feeling more grateful and I find on a bad day, after I have written my three things down, I go to bed feeling better about the day.
I am doing my best to avoid being overly stressed this holiday season. On thanksgiving I made everything I could the day before so on the actual day I would not be so overwhelmed and over it by the time company came. It worked! We enjoyed a nice long visit with family and ended the evening playing a game of Phase 10! This year we had my mom over, which has never happened. It went well and she is coming back over for Christmas dinner. I am really getting into the Holidays this year and have gone overboard with decorating. For Thanksgiving, Duste Keaton and I made hand turkeys, paper roll turkeys and colored leafs for decorating. At the end of the dinner everyone got to take home a paper roll turkey! How cute! For Christmas we are making Hand Print ornaments, which we will paint and put his name on and give them as gifts. Duste and I also made wooden snowflakes to decorate around the house. I want to be crafty so bad but it isn’t coming easily!

Duste has really stepped it up and I am more spoiled than ever. She does such sweet little things for me and I love and appreciate them all.  When I get home from work she has my house shoes and socks warm and in front of my spot on the sofa. She makes the bed and turns down my side so I can easily get under the covers. She packs my lunch and puts in special treats for me. The list goes on and on. She went to town and bought me several new pairs of PJ’s. Nice soft warm PJ’s because she was worried about me being too cold in my old ones. She is awesome and raises the bar higher than any man could ever compare to or compete with. She makes me smile. She makes me feel special and loved and wonderful. She is the only one for me. She is the only one who would put up with me—with all my attitude, mouthiness and issues. She is made for me! (Yes, I even feel this way when she is not spoiling me-ha!) She had gotten quite handy as well. She put shelves up in our living room closet the other day. They are sturdy, level and everyone is super impressed with them—including me! I am so lucky to have opened my eyes and mind just in time not to miss her in my life!
I am now getting acupuncture for my “bad” leg--where the Desmoid Tumors were. I have had three treatments a week apart and for the most part it has really made a difference in my pain. Winter time in Indiana is not so easy for me and hasn’t been since 2007.  (First tumor) The cold rainy days seem to get the best of me but sometimes just the cold makes walking hard. Lucky for me, we have a hot tub and without it I don’t think I could get through these long Indiana winters. My 2nd scar is so faint now it is hard to even pick up in pictures, but the indent is still there. I am thinking by next year it will be more filled in, maybe or maybe not. I am still seeing a personal trainer who is dealing with my weight issues-from thyroid problems-and strengthening/retraining my muscles in my “bad” leg. All of the doctors agree this is the best thing I could be doing. My knee is still a big problem. It has gone back to wanting to bend in and not support me. So, I wear a brace a lot of the time. But I am happy and healthy (enough) and I keep on keeping on! I go for my next MRI December 22nd. Duste will be going with me and we are going to try to make the trip a fun thing, if the weather will corporate!

Well, now that we are caught up—Have a wonderful Holiday, from Duste and Talisa!

Tuesday, July 19, 2011

6 month MRI


Well, I had my 6 Month MRI last week and the results are CLEAR!! I knew they would be but it is a little nerve racking. That morning, while I was getting ready to make the hour car ride up there, I was thinking there is something wrong with me putting in all the effort of getting ready to be tortured! Ha!

We got there a few mins early so we could grab a bit in the cafĂ© for lunch. (My MRI was at 12:15 and it takes a few hours)The smells of the food made me nauseous. All those memories of being in the hospital, being sick to my stomach and smelling that food and they came flooding back. It is funny how the nose and the brain connect that way.

They had me go to a new location in the hospital for my scan this time. The tube I was in was shorter and opened at both ends—so the top of my head and my feet stuck out. The MRI Tech was super nice and did a wonderful job putting up with my questions. (I can only take 15cc of a certain dye injected very slowly or I get sick) She didn't even leave a bruise! To make the scan more tolerable I jammed to Stevie Nicks Greatest Hits Crystal Vision. (Did I mention I am going to see her in Aug!!) I think with the next scan I will jam to some Jimi Hendrixs—that should cover that loud banging the machine makes! Then I headed to my doctor's office located in the same hospital—there is something wrong with knowing your way around a hospital.

I waited 3hrs to talk to the doctor for 10mins. Which is typical. I had him show me and my soul mom my MRI on the screen because I was concerned with Scar Tissue—my second tumor was missed because it was classified as "scar tissue" for two years. My scar tissue is just right behind the scar and follows it—it gets questionable when it is more round. He said even the scar tissue on my first surgery has changed and it is right behind the scar as well! He said he can also see a big difference in my muscles since the last scan—late last year. It's all the physical activities I am doing—physical therapy and now personal training and yoga. Yay! My next scan is the end of this year and I predict it is going to show a normal leg with little to no scar tissue.


Just living is not enough. One must have sunshine, freedom, and a little flower.

- Hans Christian Anderson  

 

Tuesday, May 17, 2011

Desmoid Tumors and Estrogen


There is a study being done on how Estrogen affects Desmoid Tumors. Some results seem to suggest higher levels of Estrogen may cause the growth of a tumor. "They" are not sure if this is what is causing them to appear in the first place or if it's just contributing to the growth once a tumor is there.
Here is a list I found of foods that natural have estrogen and a list of foods that inhibit the absorption of Estrogen.
I have to say I do eat a lot of foods from the first list but can that really be what is causing my tumors—don't most people eat this stuff?
I have to also consider I am on Synthroid—synthetic thyroid—which can cause Osteoporosis and Anemia because it interferes with the absorption of calcium, iron and magnesium. (Long term side effects)
Ahh…having a rare tumor is so much fun! I wish someone would just tell me X, Y and Z causes these tumors—don't eat, drink or sit next to these things and you will be fine. Life would be so much easier. Without this I find myself questioning everything that I ingest. From pills to the dishes we eat, drink and prepare our foods in. It can be exhausting but I am determined not to have a third reoccurrence!
Foods Containing Natural Estrogens
  • Alfalfa            
  • Animal Flesh—ew! That just sounds wrong!
  • Anise Seed
  • Apples
  • Baker's Yeast
  • Barley
  • Beets
  • Carrots—all time fav!
  • Cherries
  • Clover
  • Cowpeas (Black-eyes peas)
  • Cucumbers—another fav!
  • Dairy Foods—OMG, I do not think I can live without these!
  • Dates
  • Eggs—I could take 'em or leave 'em!
  • Eggplant
  • Fennel
  • Flaxseed
  • Garlic—was really starting to get into this!
  • Hops
  • Licorice
  • Oats—I am an Oat eater!
  • Olive Oil—have been using this forever!
  • Olives
  • Papaya
  • Parsley
  • Peas
  • Peppers—this is another big one for me!
  • Plums
  • Pomegranates
  • Potatoes—seriously?! I have to have my taters!
  • Pumpkin—my family will be sad, there will be no more Pumpkin Cheese Cake bars.
  • Red Beans—and rice, yes please!
  • Red Clover
  • Rhubarb
  • Rice—poo!
  • Sage
  • Sesame Seeds
  • Soybean Sprouts
  • Soybeans
  • Split Peas
  • Sunflower Seeds—my dad would buy these for me all the time growing up!
  • Tomatoes—I will eat them but they are not my fav.
  • Wheat—was always told to eat Whole Wheat.
  • Yams

     
Estrogen Inhibiting Foods


  • Berries—ok, this is good.
  • Broccoli—this is right up there with carrots.
  • Buckwheat—I thought this was just a character in Lil Rascals!
  • Cabbage—could live without it.
  • Citrus Foods—not my fav.
  • Corn—good thing I live in Indiana, the CORN STATE!
  • Figs—the old people fruit! Ha!
  • Fruits (except apples, cherries, dates, pomegranates)—I am more of a veggie person really.
  • Grapes
  • Green Beans—this is the only veg my sister will eat so I do eat a lot of this.
  • Melons
  • Millet
  • Onions—LOVE onions
  • Pears
  • Pineapples
  • Squashes
  • Tapioca
  • White Rice—a little flavorless, but I guess I can figure out what to do with it.
  • White Flour—I will not know what to think to eat plain white bread again…

Tuesday, March 29, 2011

6 Months since 2nd Surgery!!

 March 28th 2011 marked my 6months since my last surgery!
 Here are some pictures~