Confused March 20, 2008

So I talked to Dr. Snyder, who is a very kind man. He did tell me that if there was something behind the walls or inside the lining of my colon he would not be able to see it. He also explained how very rare it is to see Hodgkin’s go into the GI tract. I really do understand what rare means. I also know that I’m really good at being rare. So that doesn’t ease my mind. Karin also called to confirm Dr. Snyder’s thoughts.

Here are my concerns:

Positive PET scan

MRI shows thickening and an a-symmetry to it

So this tells me the PET was not a False Positive

I verified that a biopsy would not come back positive if it was taken in the wrong area

This THING could be in an area they can’t see

Me waiting to see if it eats through the lining and causes bleeding seems ludicrous! I would like to catch things b-4 they do damage. I would like to be proactive and save me the pain of going through Chemo and Radiation again.

I want to catch things at the earliest stages to prevent any chance of me having to go through chemo again. So I want to be 100% sure that this could not be cancer of any kind. I don’t care if we just ruled out one type of cancer but I want to make sure it isn’t any kind. My mind is not at ease that it is nothing. I am willing to wait and take the antibiotic and see if it is inflammation. Then if there is something still there in a month from now I think we should figure out what the heck it is b-4 it gets me fighting for my life again.

That is my little rant for the night.

Silver Lining March 15, 2008

After all the doctors appointments and emotional breakdowns Friday there was a great ending. Mom took the kids overnight (The saint she is!). Russ took me to see the Broadway musical, “Wicked” and got us a hotel room for the night in Laguna. We had his firm educational lunch Sat morning in Laguna Hills so it was easier to stay up there for the night. It was such a fabulous play. It is my new favorite play! It was a great end to a really bad day. It was such a wonderful fun date with my hubby!!! He certainly made up for not being there earlier in the day.

We had the MRI today down in San Diego. It was at a different office so it was a new experience. They strapped me down and the machine was a long tube. All my other MRI’s were quick and a small circle that they would move not a tube. They put headphones on my head with music. Then all of the sudden I hear a really loud alarm go off. I jump and try to move my head back to see Russ. I thought it was a fire alarm and I was waiting for him to unstrap me so we could get out. This alarm was SO loud and kept going on and off. Then I realize this was the machine making the noise every-time it took a picture. The alarm then started speeding up like a machine gun and the machine was vibrating. It was terrifying. It was really unnerving. The only time I heard the Tech was when he told me to hold my breath. Then after 10 mins of taking the scan they came back to put the dye in. This was also different. All my other MRI’s had a blue or red dye that they would inject through an IV. They would stand there with me and watch me the whole time to see if I had a bad reaction. They would push it fast and I would get this funny taste and feel like I had to pee it would get really hot. Well this tech got the vein the first try and it didn’t hurt at all. He put clear dye in and it didn’t have any side effects. More alarms and pictures then it was over. It was over all the best MRI and the weirdest. I didn’t like the loud alarms - even Russ had ear plugs in. But hey they got the dye in with one stick. It was a HUGE success!!! We will have the results sometime next week from all the tests.

I know it’s been awhile…. February 4, 2008

The truth is, I think I ran out of words. I was in a funk and I just didn’t know what to say. I think there must be this interim period after cancer where you don’t want to jinx or believe too much that it is really over. I find myself living up every minute and hoping it won’t all change again. I get moments of anxiety when I smell something or see a picture that triggers all those old feelings. I feel so blessed to be done. I also feel a great amount of guilt that I made it through. I know that may seem backwards but when I see those around me that have been battling this along side of me, die, or not get any better my heart just aches for them. I wish I could give some of my healing to them. I know how discouraging it can be. I went to the funeral of a dear friend who lost her battle to cancer. It is overwhelming to see how deadly this disease is. What a horrible and awful thing this can be. As I ramble I guess you can see why I have been in a funk.

I went to the doctors today. They are testing me for thyroid, anemia, lymphoma markers, oh and my estrogen levels. No scan is scheduled. I’m having weird dizzy spells and have fallen a few times. My eyes seeing blurry spots. My wrists are killing me might be arthritis caused by all of this. My skin has been really sensitive to touch. The only way I can describe it is having a really bad sunburn. Still having bleeding issues along with cramps. Having some night sweats and exhaustion again. Besides that I’m wonderful!

My days are filled with wonderful play dates and photo-shoots. I love seeing my calendar filled with fun activities again. I feel truly blessed to have made it through this. I’m reminded daily as I see others still suffering how miracles happen in our lives. I seem to notice so many little things. Like how wonderful the rain smells and how much I love to feel the wind in my hair. I love being able to put mascara on my new eye lashes. Life is sweeter then I remember it. If there is one thing I want to always remember from this, it is: to take the time to appreciate all we have. No matter where we are in life, no matter how much we have or want, our lives are so full. They are filled to the brim with amazing abilities and experiences. Each breath we take in pain free is an amazing freedom. Enjoy the sun and the smell of fresh cut grass. Just take time to notice how much you have and you will feel better no matter what you current state is. Have a wonderful day counting your many blessings!

My Cough is still lingering December 15, 2007

I can feel it rumbling and crackling right in the area they radiated. I wonder if it is related? My toothaches have finally subsided. They felt horrible for a week there. I wanted them all ripped out to relieve the pain, but we are back to teeth feeling normal now. I’m just wanting for my energy to bounce back. I wonder if I will even recognise what it feels like since it’s been so long since I’ve felt energy. I have humbled myself enough to know I can’t do this alone - I need help. As much as I selfishly would like to have my Mom live with me forever, I know she needs to move on with her life and start the next chapter with my Dad. She has spent the past 3 years unselfishly talking care of me and my kids through miscarriages, bed rest and now cancer. I will never be able to repay that debt. She is the wind beneath my wings. It will be impossible to replace my Mom!!!

We are now looking for a Nanny, well more like a Mrs. Doubtfire. They can live in or out. I just know I can’t do this alone. I’m too weak and sick to get back to my healthy state without help. One of the causes of reoccurring cancer is stress. So as much as I want to be a super Mom and do it all, I owe it to my family to ask for help. I’m in a very weird mental stage in this cancer journey. I’m still crossing my fingers that all is clear and in the small window of time before we get the official results all I can do is lap up all the fun freedom I can while I have it. I feel like it is binging. I’m so afraid I won’t have it again so, I want to do it all and not miss a beat. But my body has a different agenda. It is still suffering the pains of being almost killed. I didn’t think I would have such a mental battle at this point. I thought the hard part was over. I guess now the new part is redefining my life, priorities and learning my lessons of how to ask for help. That is such a tough one for me. But seems to be the running theme through this. So this is me bearing my very imperfect soul to the world and letting you know that I’m struggling. I’m also actively trying to figure out what is best for my family. So I guess I will leave you with these very wise words, “Calgon, Take Me away!!!”

How do you slow down when all you want is to speed up December 12, 2007

Being sick and unable to run your life is like being in a prison.  As soon as you are let out all you can do is feel overwhelmed and lap up every moment of freedom you can.  This is suppose to be my week to become somewhat normal.  Now I will have you know I’m holding WAY back as to what I really want to do.  I have had a week filled with wonderful activities that have kept me feeling alive!  Now my dear loving family wants me to stay home and rest.  They want me to get better.  I truly understand this, but being at home resting is stressful.  It makes me have panic attacks.  I feel like I’ve had chemo all over.  I can’t mentally stand being at home resting when I know I’ve been so much worse.  Taking away my fun things I have planned is like punishing me.  I know I’m tired I know I’m coughing and not getting better.  But what would help more than grounding me is help.  I need my life back as much as I do my health.  I need friendships and I need to feel like I’m contributing in some way.  There has to be a way to get better and also have a life.  I’m looking for ideas.

Insomnia December 6, 2007

I’m having such a hard time sleeping. This seems so strange b/c physically I’m exhausted. I can’t seem to quiet my mind down. It seems to race at night. I go from thinking about blood work to loading the dish washer, books I’ve read, what to cook, am I in remission, all the questions I forgot to ask, errands I need to run, solving problems all with in minutes. I just can’t seem to just relax and sleep. I feel alive and I’m so thankful I’m able to start filling my calendar with activities again. It is really wonderful to look at your calendar and have fun things to look forward to. For along time now all my calendar included was chemo, radiation, doctors, pet scans, blood work ect… I feel so happy I have things to look forward to now. It is the little things like calendars, buying a Christmas tree, hanging lights & picking up my kids from school that seem to make me giddy. What fun it is to feel freedom and not be so controlled by a disease.

Hairs coming in December 4, 2007

I now am wearing my new short hair without scarves. So if you see me don’t be too shocked. My Dad likes to call me his little gay boy. He likes to rub my head b/c the hair is soft and reminds him of a bunny. Always leave it to Dad to build up your self esteem. I get a lot more looks now then I did when I was bald. When I was bald people would look away as if they were seeing me naked. Now they stare, I’m sure wondering if I chose this hair style. It is fun to watch people’s reactions.

Mom is back from the hospital. She is sore and hobbling around but isn’t in terrible pain like before.

I had a chest x-ray this morning and I should know the results tomorrow. The moles we are going to just watch them and see if they change shapes or turn black. This nice itchy rash we are going to try and mix some cortisone and litromen and see if that helps. When I went to the doctor and the doors opened it smelled like chemo and it made me sick. All the memories came rushing back with one whiff. The amazing thing is that no matter how sick or tired I may feel I feel 100% better then I did after chemo. So I’m counting my blessings. I’m so overjoyed that today I didn’t get poked or prodded or fried. I left the hospital without throwing up. I felt so happy and filled with relief that I don’t have to go through this any more. What a blessing it is to be DONE!!!

Me and my nephew Caleb. His hair is longer but I think mine is thicker.

Surprises December 3, 2007

It seems like a lifetime ago has passed since radiation. It is amazing how fast my life went back into action. I was able to give Tyler a birthday party on Friday and Sat. He had a few friends over for a Harry Potter sleep over. We did potions, grew dragons, made slime, tattoos, decorated wands and made chocolate dipped wands. It was quite a full night. Tyler was so happy his Mommy was able to do his party - it meant a lot to him. I think I faked feeling good so he had no idea how hard it was for me.

My Mom went into the hospital yesterday after she was up all night with horrible pain. I sat up with her and gave her medicine and ice. It was nice to take care of her for a change. She has a 7mm kidney stone and some kind of infection making her have chills and shake. She will have the stone removed tonight. I’m glad she isn’t in horrible pain with the IV drugs.

My cold has turned into something not good. I’m coughing up green stuff and my chest is crackling. I have strange moles popping up that are different colors and some are bleeding. Not a very good sign. I also now have that rash back that was super itchy that went away when they started chemo & now has decided to return. But all in all I’m better then I was during chemo. It’s funny how much your scale of what is good or bad changes after you have gone through chemo.

Normal Life November 29, 2007

I’m so tired and weak I didn’t think I would be this tired.  I can feel the boys cold coming on and I’m praying It doesn’t get bad.  That was the doctors fear was I would catch something when my counts are so low and it will turn bad on me quickly.  It is frustrating to me because I want so badly to go back to my normal life.  I’m trying to fake it until I make it for now.  I ran errands, attened play group took Luke to the Doctors & had the car looked at.  The nice part of today was I didn’t have to get radiated or poked or proded.  It was amazing!  I’m so looking forward to the day I wake up and truly feel normal again.  There is joy in the smallest things like just feeling normal.  Maybe Tyler & Adam’s Christmas wish will come true and Santa will make me better for my present.

All Done???? November 28, 2007

YEAY!!!!!! Radiation is over and I only had to throw up on the last day. I guess I got out of there just in the nick of time. I have a nice burn on my skin that feels like a bad sunburn. I also have a nice cold thanks to all the wonderful little munchkins that have been sharing their sweet germs with me. I have surgery to remove the port scheduled for next week - then we will start healing.

I’m so happy and thrilled that the treatment process it finally over. Thank you to all for being there for me through this. I love you!!!