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!! 

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! 

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.

 

Clear and Unchanged

 Yesterday I had my 1^st 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!!

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.

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!!

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 café 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  

 

Clear MRI

Yes, that is right! My 3 month MRI is clear, which means no signs of any re-growth!! Woo-hoo!!
I felt pretty positive about this test; it is all the other MRI's after this one that makes me nervous. Duste, however, was a nervous wreck. We are both glad it is over and behind us—for another 6 months!

I did find out the Dr implanted some sort of marking indicators that would show up on the MRI so they can easily see the margins of the last tumor. He said everything was there that he expected and nothing was there that he didn't. The MRI machine that we used gave great pictures in just half the time so we are going to continue using that machine from now on. Which means traveling to Indianapolis for an all day event but I am all for it if it means clearer pictures!

Physical Therapy is going great and she is super impressed with my improvements during the two weeks I didn't see her. I would like to take this time to proudly announce I can once again sit "Indian style", for a little while anyway! I still haven't mastered walking up and down the stairs like a normal person but it is getting better! My knee is also starting to act right and we are doing a little more weight training to get it strengthen back up. I have to say, losing a muscle really isn't stopping me!

Also, this week Duste had to have a tooth surgically removed, a first for us both. She came through it ok and now is on the road to recovery. We have one more serious doctor's appt before Christmas and then we are on a break from all medical emergencies—at least if I get my way!

Top~3months after surgery #2

Bottom~sitting "indian style" creates an indent from the missing muscle

Happy holidays—from Duste and Talisa