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…..

Pure Love

It could just be the brain chemistry pills finally taking full effect but I think 2013 is going to be a wonderful year! They always say, life is what you make it and we are going to make it wonderful!

We have some big plans and big changes coming up in 2013 that I think will shock and surprise everyone! It is going to be AWESOME!!! Being the planner that I am, plans have started but nothing will be announced just yet.

Happy Happy Joy Joy !

I did not think it was possible but Duste and I have truly become closer in the time we have had together this past year. It is hard to explain really but our souls really connected. At the same time I let go, I stopped holding myself back. That was one thing that helped to bring us closer and all the time we have had together. I was never holding back with Duste but I was always holding back when it came to everyone else. I worried too much what people thought and I am passed that now. There is nothing wrong with our love, in most cases it is stronger than others I know who are in marriages and have been for years. So get ready, 2013 is going to show the real me, no more hiding. My love, our love is real. Like it or not. We deserve what everyone else in love does and we aren’t going to sit around and wait for it, we are going to take it! We don’t care who likes it or agrees with it. Life is too short, open your eyes people and step out of your little box. The worlds a big place when you let your heart open up!

 

A few pictures....

I thought I would share a few pictures!

I’m dreaming of a white Christmas!

But wait, I don’t want Christmas to come! Duste said she will postpone Christmas, hold the calendar but I don’t think everyone will go for that. Not to sound like a baby but once Christmas time comes then my surgery will come too soon.  L

I am not looking forward to it but who would be right. The worst part for me is the waking up after—not knowing what to expect. But I have a plan, I have my big girl panties and I have Duste—I will be ok.

Now if the Doctor would just call back so I can talk to him about my plan. Since this is my third time I know what my body needs. It is sad but yes, I am getting good at this. I want my epidural, those are great, and my catheter put in before I wake up. Then I want control of the pain meds they are pushing in my body. I do not take well to the meds and usually go without once I have control of them.

My goal is to only be in the hospital one night—this can be achieved if they let me have control of the pain meds.  

______________________________________________________________________________________

Surgery Plan

Surgery Day

Epidural with Catheter—put in before I wake up

I have control of pain meds being pumped into my body

2^nd Day

Take out catheter and epidural—in that order, early.

Switch over to pain pills if needed.
______________________________________________________________________________________

It may seem like I am a control freak but it is for the best of my body. I have one goal and that is to get out in one night and that is in everyone’s best interest. Ha!  Duste and the Dr will have a copy of this so we should all be on the same page.

Being home in the care of Duste is so much better than being in the hospital. She takes very good care of me, better than any hospital staff. I just love her!

2012 has been an interesting year.

We lost our dog of 12yrs; we adopted our new baby at 7wks. Duste’s dad had some close calls with his health but now he feels better than he has in many years.  Duste career didn’t go as planned, but we are keeping the faith that 2013 will work out for us. We have been truly blessed to have had this time together; I feel so close to her. Words cannot begin to describe how thankful and lucky I feel. We have made a beautiful home together; it has really come a long way this year. More planed next year but we are nearing the end. For me personally I feel more stable and secure than I ever have. It feels great to let go and focus on me and mine!

I may not know what the future holds for me but I do know without a doubt Duste will always be there and that is enough. We can have hopes and dreams but we will always have each other.

My health has been an interesting issue this year—I have developed more pain in my joints and muscles and my exhaustion has increased. I have developed a 3^rd tumor and it will be removed the end of this year. I hope 2013 brings answers to some of the mysteries for me but either way I will keep on keeping on—yeah, I so just typed that! Ha!

My wishes for 2013:

I am wishing for Duste to have a wonderful secure job making it possible for me to stay home and therefore start planning a family of our own.

I am wishing for near perfection with the house, reaching complete perfection in the next year.

Good health and happiness for both of us, for Duste’s sake.

Stability—I love stability.

Of course if we lose a few pounds that wouldn’t be bad either!

 

Here’s to another interesting year—that is, if it doesn’t end on Friday 21^st!

Christmas Candy and Surgery Prep an interesting combination

 

Lucky for me my meds keep me at a nice even level--------just like that, ha!

 Typically I love Christmas and New Years. I love to bake, make Christmas candy, watch Christmas movies, drive around to see Christmas lights and take it slow so I can enjoy the time. I hate when you look back on the holidays and it is just a blur.

When I have a surgery coming up I go into survival mode and operate on Auto Pilot. I shut down both mentally and emotionally.

I keep reminding myself to wake up, pay attention it’s Christmas time!! It’s a daily, hourly battle but I keep fighting. I don’t want to look back during the long, cold, dark month of January and feel cheated.

My Duste has gone out of her way this year to make it special for me. She has bought gifts after gifts for me to open together and at her parents’ house--Extra Special Extra Good gifts this year! She has decked each room of our house out in Christmas Cheer—I tell ya, sometimes I sit on the potty a little longer just to enjoy the Christmas in the room! I am so blessed to have her.

This is my last week to work—I am taking Christmas week off for the Holiday and most of January for recovery. Being away from work gives me the time to enjoy the things that are truly important to me, my soul-mate and love of my life, Duste, our puppy Ivy and the home we have together. There is nothing better than spending a quiet evening together at home, doing a puzzle or sitting in the hot tub! I truly do cherish those times. I wouldn’t trade those moments for anything and can never have my fill of our time together. She is wonderful and I could never say enough good things about her!

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…..

Winter Time Blues

It started with decorating the new front porch and putting up the tree—it spread from there. Now the living room windows, stairs and doorways and flows into the dining room. Holiday cheer continues over the window, on the table, doorways and fireplace mantel and into the kitchen. Above the cabinets, around the window, on the door and a table runner on the bar, bright and sparkly red and gold! It is now spreading to the bathroom; it started with the toilet seat. The house looks so happy dressed up!

 

Surround yourself with bright, shiny, shimmery things when the world outside is dull and cold.

 

Next step is to make your home snugly warm, add a comfy couch, warm socks and fuzzy pj’s and don’t forget your over sized blanket. Now settle down and watch funny movies! Anything that brings a smile to your face and a giggle from your lips will do! Hell, you might as well take a nap or two!

  

This is the cure for the winter time blues!

Making Short Term Disability work for you—

Disability at my work --you get a fraction of what you would normal bring home. Oh and the best part, the first week you are off you get nothing. But I am so thankful we have it and I am able to take advantage of it!

Disability is paid in the month it is used—this would be helpful for January Bills.

Any time I work in January would be on my February check—not helpful for January Bills.

So, after stressing over it for two days I have decided to pay January’s bills out of savings then as I get disability checks they will go to pay back the savings acct. In the end, it should all come out in the wash!

Shew—glad I got that solved.

It’s so exhausting to deal with both personal and work life.

Speaking of exhausting—I am finding it hard to get off the couch after work. I feel like I could just sleep my life away. I have started taking lots of vitamins to help build my immune system and to give me a much needed boost. Unfortunately it takes 3wk or more to start seeing results.

I am taking a Multivitamin, B12, B50 and Vitamin C. I take the B50 and Vitamin C 3xs a day.  So far it’s been a week—so two more to go! I hope this helps, I could really use some more energy!

My love My Life My World

I’m 29 exhausted most of the time, have constant pain and have anxiety/depression issues. All this leads me to be cranky at times. But my baby stays by my side. I don’t have to be perfect, smile and be the life of the party, she loves me anyway. She is caring, loving, understanding and she is always there.

 Sometimes I whine, complain and act like a baby. Most mornings it takes 15mins or longer to get me out of bed, sometimes it takes that long to get me off the couch at night. I nap often, sometimes with no warning at all. She does her best to make sure I get to work on time and left alone for my nap time.

I am needy, lonely, moody and opinionated—but she puts up with it all.

I don’t know how she does it, putting up with me has to be a hard thing to do but she does it with a smile on her face. She has nursed me through 2 surgeries and soon to be a 3^rd. She is the only one I want with me when things get bad, sometimes just to be in the room is all the comfort I need.

She is amazingly strong, amazingly soft and very dedicated to our love.

  She worries too much about me, my health, my well being. She gets herself so upset with the what-ifs. But these episodes come infrequently because I throw a fit until she stops—ha!

I love you Duste Alijane Eggers! You are my world!

 

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.

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!

 

Another Desmoid Tumor

This is my 3^rd tumor, 3^rd 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 3^rd 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.