Share. Connect. Love.

Let's Kick Some Mass

Thoughts and stories about making my way through having a mass on my brain

Latest journal entry

Posted 2019-09-20T02:03:00Z

Not What I Had Hoped

I had a new MRI on Tuesday.  It didn’t turn out as I had hoped.  The doctor walked into the room and asked me right away how I was feeling, and so I assumed something wasn’t right, because every time she comes in, she says, “Scan looks good!”.  So, when she didn’t say THAT, I knew something wasn’t right.  So, I told her my symptoms which were:  I have been off balance and pre-occupied, it is hard for me to stay on task.  And then she said, “It is growing and it has crossed over to the other side.”  That means I cannot have surgery on it.  I am going to start a new treatment tomorrow (Friday) called Avastin.  It is supposed to stop the blood flow to the tumor, which is how the tumor grows.  You may have seen it advertised on tv.  I will be getting it through my port every 2 weeks for 6 months. 

I had a feeling something was “off”.  My balance hasn’t been the same the last month.  I kept thinking, “Is that me, or is that just in my head?”.  Evidently it was IN MY HEAD. 

I have decided I am not going to drive anymore.  I feel kind of relieved about that, because I was not feeling very safe in my car lately.  Things would come up on me from the side, and I would be like, “Where did that person come from?  How come I didn’t see them coming?”.   I told the kids to sell my car and we would split the money, but they said, “Let’s just keep it here and Susan can use it when she comes to town”.  (Susan here (who is transcribing this) – Thank you.  I didn’t know that, makes me cry.)

I gave myself a new goal a couple of months ago to move out on my own next summer.  But now it looks like that won’t be happening.  That makes me feel sad. 

I have been on several trips the last few months – 7 trips in 8 months!  February – Florida (with friends and we saw dolphins).  March – Hawaii (with my kids and grandkids and we snorkeled with turtles).  April – Washington DC (with my sisters and we saw cherry blossoms).  June – Florida again (with my sisters to celebrate our 3 birthdays).  July – Kansas City (with friends and family to see my brother-in-law David’s play).  August – Florida AGAIN (with friends, saw nice sunsets and swam with dolphins).  September- Arizona (with my son Nathan, Lyndsey, Ryker and Keegan – walked on the glass walkway over the Grand Canyon).  I applied for a passport now because my sisters and I want to do something special for Mary Day this year.  We haven’t decided what exactly.  But I have a passport now so I can leave the country if I want to.  And not come back if I don’t want to!! 

I am walking in the Alzheimer’s Walk this weekend.  Then I am going to have lunch with an old friend, Julie, and bring along 2 other very long time friends Karen and Dottie.  In a couple of weeks I am going to hang out with my friend Susie Evers at her cabin.  I am going to go to Kansas City again in November to watch my friend Corey and his band. 

I am SAD, but I am not SCARED.  I am just sad I am going to miss out on so much.

I think it is going to go really fast now, because the tumor has grown so much since my last scan.  I didn’t think I would be the first one to go.  I am going to try and be brave. 

I can't:

- Worry about it, that won't change anything.

- Believe I have this awful disease.

- Believe I won't see my grandbabies grow up.  Makes me soooo sad.

I can: 

- Be brave.

- Cry if I want to.

- Give up my car if I want to.

- Try and relax and not think about my kids and grandbabies.

- I can and WILL miss them so much!!!!! 


Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted