Love of my Life

Love of my Life
Happy moments... Praise God. Difficult moments... seek God. Quiet painful moments... Trust God. Every moment... Thank God.

February 27, 2010

I am trying to balance keeping my friends up to date on things and mixing in some of my feelings.I don't want this blog to become a thing people avoid because it makes them sad. I do though want to keep you informed so you will know how to pray for me.

The biopsy is Wednesday and I'm told my treatments can't start until we know what type of cell being treated. Please pray that this thing stops growing now. Please pray for healing and pray that it just goes away. I know that God can work miracles. My langauge is becoming more challenging. I can see what I want to say but struggle with the word. Sometimes I say something and think I've said what I intended to say and something else comes out. We're in the midst of planning my wedding for April 17... please pray for improved communication and please don't let it get worse. Other than my language, and occasionally bumping into things, and the feeling of pressure in my head, I'm doing pretty good. Once I get through surgery and get my treatments started, I'll work with a nuero optomologist to help retrain my eyes.

Also, HyVee on Langsford Road and 291 is wanting to have a Spaghetti Dinner fundraiser for me. We're working with them on a date.. possibly Wednesday, March 24. I'll keep you posted so that you can come by and have dinner and say hi to me. I miss my friends and co-workers, and I really miss my customers.

I do have good news about my insurance coverage once married. Greg's plan has my oncologist in their network! That is GREAT news! Mom, being the anal person she is though, is having a person she knows in the military actually check their plan (again) to confirm. Just in case my friend read it wrong. She also had to actually read a copy of Tri-cares benefit plan before she felt comfortable starting wedding plans. We have a lot to do before the wedding and it's rather crazy with everything else going on... and I'm not much help since I can't drive, communication is a challenge, as is reading. Mom's meeting with an event planner Monday night. It's the one thing she can delegate to someone else.

Please add the things below to your prayer list...

* God's continued grace
* Starvation for the tumor... no more growth
* Steady hands on Wednesday by the doctors. Quick prognosis and for treatment to begin this week.
* No more decline in my speech and language
* Pray for Greg. I know this is very hard on him. Pray that everything comes together so that he will be here in time for our wedding.
* Pray for Dad, Mom, Todd and Hannah. I feel badly for what this disease is doing to them. I never wanted to hurt them or upset them.
* Thank God for good doctors, MRI's and other test that can detect and help treat the illness.
* Pray to make me better.

Thanks for checking in. Thank you also for the many cards. It does help to know that people are sending prayers to the man in control. I've also enjoyed seeing the posts from some of my previous favorite teachers. One day I hope to be in the class room helping students in some capacity.

oh and one last thing - I'M SO EXCITED FOR MY WEDDING! The pastor I really wanted to marry me said she is avaialble and would love to be involved. I'm hoping next week when my sister is home that we can shop for dresses.

Delete It Cancel

February 25, 2010

a little distraction

Hannah thought it was time for a little distraction and humor... she posted this to my mom today.

My Push up Bra will help me get my man
Tina on her way to accidentaly run into Peter... She will get him with her new Kool-Aid Hair and push up bra! " For RINGTONE from Tracy text GLOZELL to 69937 (MYXER). Thanks

My distraction today was spending the day with my Uncle Mark... check out the picture!

February 24, 2010

Meeting with the "sleep" doctor

All opinions are in and it's 2 against 1. 2 recommends no surgery... risky, may not help much, so why put myself through it and suffer the highly likely side effects of further immediate disabilities. We are still waiting on input from Dr. Berger in San Francisco. I'm not expecting a different opionion at this point... and at this point, I'm not sure that it matters much. Surgery scares me.

I woke up from a nap today, and thought this was all a bad dream. But then, the pressure in my head took over. It's not a headache, it's just intense pressure.

I am pushing to get a picture of this thing that is invading my brain. While I've seen the MRI, and I know what it looks like. I want to have a picture of it in my room. Mom thinks it's silly.. I'll obsess over it... I might. But I want to see what I'm fighting. I want to look at it every day and say, I'm going to beat this.

The biopsy is next Wednesday at 8am. I'm hoping it will be outpatient surgery. It will depend on how deep they need to go to get a good piece of tissue. And unfortunately a biospy of the brain is a little different than a biospy of the boob.... it takes more than a needle. They actually have to remove part of my skull, then replace it.

Greg is working to figure out what my insurance will be when we get married. So far good news. No preexisting condition and no waiting period. Now I need to make sure my oncologist is in their network. If this all comes together, the wedding will be April 17th. Everyone who loves me and who is praying for me will be invited. I hope you can be there. Since I'm not sure how I will be feeling at the time of the wedding, we're not planning an elaborate affair or a big dinner. I want to focus on the celebration of marriage, it's meaning, Greg, my family and my new family. Of course we'll do something to make it memorable.

I've been sharing Hannaha's words of wisdom, here's one from Todd... “Love is stronger than death even though it can't stop death from happening, but no matter how hard death tries it can't separate people from love. It can't take away our memories either. In the end, life is stronger than death.” And.. my brother is coming home this weekend to watch movies and pig out on ice cream with me.

February 23, 2010

Beating the Odds

Next steps...

Cancel the surgery
Schedule the biopsy
Get results from biopsy
Determine best way to stop tumor growth
Start Chemo

Plan wedding
Get married
Be with my babbers.. for as long as possible

Tell Dad I love him and it's okay. Tell my Grandma's I'm okay. I love God.

BEAT THE ODDS... This tumor doesn't know how the Morris women put up a fight.

call from the oncologist - one year

I was all ready to go shopping today with my Grandmother Morris. I was excited to get dressed up to go out to lunch and to have a little fun. Then the phone rang. It's was Dr. Taylor, the oncologist, who took my scans to the Tumor Board meeting last night. The Tumor Board made up of many doctors, giving their opinions. Their advice... no surgery... while they may be able to resect some, it would not be enough to make a dramatic difference, and quite frankly it was to risky. The quality of life could be bad. What do I do? I asked, "How long am I going to live?"
Her response... probably one year.

February 22, 2010

I'm MAD!!!

The more time I have to sit around, the angier I get. I'm suppose to be in school right now working on my final year of education and submitting applications for student teaching in the fall. I'm suppose to be planning a wedding, enjoying life, and getting out from under my parents.

Everyone is being so nice... they are concerned. Mary Nelson and friends made me a beautiful prayer quilt which was presented to me Friday night. Several people came by to visit. It was nice to see everyone. It was nice to chat with everyone... and they were very patient as I chattered about everything. And yes, sometimes it really is just chattering as it takes me awhile to get the question answered and sometimes I find I didn't even answer the question. This is MADDENING!

People are worred because I'm spending my time getting rid of stuff. They think I'm getting myself ready for the worst thing that could happen. I guess maybe I am, but I'm really just bored so I might as well do something to keep me busy. They also worry because I'm so candid about what this could really mean. I could DIE! I might have a brain tumor growing in my head but I'm not stupid about the reality of what it could mean. I can't drive so I'm stuck at home. My friends work so they can't take me anywhere. Tomorrow my Grandma Morris is taking me shopping and out to lunch. Thank goodness for Grandmothers!

Mom keeps telling me to try and focus on the good...look for that "ray of sunshine." I know it's her job to keep me positive but right now it's a bunch of crap. There isn't much good in all of this. Even though I did learn that the chemo drugs will not affect hair loss... even though Dad spoke with someone this weekend who has 2 relatives taking Tremador and the chemo has been effective at stunting the tumor growth. If this thing is a grade IV tumor, the drugs better work fast, and the surgery better be a success.

Wednesday I meet with the "sleep" doctor to find out more about the awake brain surgery and how all of it will work. I'm very curious to hear if I will actually remember anything.

Hannah's last post to me... "when life brings you to your knees, you're in a perfect position to pray." I say you're also in a perfect position to hit your head agains the ground and scream why me!

February 18, 2010

Evaluation Options Continue

We had a good meeting with the oncologist today. She made Lindsey feel very comfortable... hugged her as she arrived, acknowledged her feelings and she listened to her, which right now can be painful as she struggles for words.The tumor is affecting the language/speech area of her brain, and it appears to be getting worse pretty quickly. She made us feel as if we were friends, vs a doctor patient relationship.

It's overwhelming. There are so many things to consider and each option has inherent risks. Don't operate and the chemo may not stunt growth quick enough. Do operate and complications from the surgery could occur. Consultation with the large clinics such as MD Anderson and Mayo will most likely not yield better results because of Lindsey's history. Qualifying for clinical trials is unlikely due to her previous tumor which limits the use of radiation. We're learning that the treatment options from the various institutes are similar. As Dr. Taylor shared today, we are asking all the right questions, evaluating our options, doing the right research. We need to go with a decision that we're comfortable with, that feels right, and don't look back. And unfortunately, time is not on our side right now.

Tomorrow we drop off the MRI's for KU's tumor board to review. Will they propose anything different? We will see.

The "good" that Lindsey heard today was around the side effects of the proposed Chemo. This particular Chemo (Temador and Avastin) does not result in hair loss.
Thank you God for that delivery of news.... Lindsey needs some rays of sunshine to come her way as she copes with this chronic illness.

Tonight, Bob and I will help Lindsey complete her durable Power of Attorney and Living Will. We must.. while it's painful to think about, we must be prepared and only pray that it is never used. I would advise all parents of adult, unmarried,children to do this now vs waiting until it's medically necessary. It's much easier to think about when it's pursued as an effort of preparedness.

Today's encouraging quote from Hannah to Lindsey...

"There is no telling how many miles you have to run while chasing a dream." We say, keep on running and chasing the dream Lindsey!

February 17, 2010

Decision time... Oncologist consultation on Thursday

I'm thinking I need to move forward with the surgery. While I've (we've) considered getting a second opinion, our confidence in Dr. Clough is very high, and all of our research is presenting the same options as Dr. Clough's recommendations. Before we make a final decision, we'll consult with the Oncologist at KU Medical Center, Dr. Sarah Taylor. I've learned that she is very good, and she only treats patients with malignant brain tumors. Lucky me... that's a joke. My questions for Dr. Taylor are around the success rate of slowing the growth, and shrinking the current tumor, if we only use chemo. My concern with surgery is around the side effects of operating on the brain. I already have some disabilities, I don't need more. This is something I have to seriously evaluate.

So much to consider.

Dr. Clough's office called to schedule the surgery. If I move forward it will be March 3, at 8:30. My pre-op is Feb 24 at 11:00 where they explain what I will experience in the awake procedure.

My sister shared the following quote with me today - "If you're going through hell, keep on going." from Winston Churchill.

I'm sure that when I make it through this, I will feel as if I've been through hell.

On a positive note, I got to spend the day with my Grandmother. Yumm.. homemade waffles, card games, etc. Thank goodness for Grandmothers!

February 16, 2010

Update from the consultation with the neuro-surgeon

As my mom mentioned in her first post, we're going to focus on looking for the positive things that are happening. While I learned that I most likely have a mid-grade 3-4 glioma tumor, which is a chronic tumor that I will battle for the rest of my life, it is operable. That's a good thing as the chemo therapy is most effective when the tumor size can be reduced from the start. So, I have three options:

1 - do nothing and continue to see my speech and language skill deteriorate, along with ongoing vision problems, and my lifespan would be shortened. How long... well the dr. could not answer that question.

2 - have a biosopy taken, determine the tumor type, and treat with chemo. Again, the same lifespan questions exist.

3 - do surgery, proceed with chemo. If I do surgery, it will be "awake brain surgery". There are only 2 dr.s in the metro area that do this and Dr. Clough is one of them. (Dr. Clough by the way seemed very knowledgeable, he passed the "Grandpa" test, from my Grandpa who is a retired doctor, and he's really cute... my own version of McDreamy.... sorry Greg ;o) This option has the most chance of increasing my lifespan. Chemo would most likely last for 2 years, maybe longer depending on how the tumor responds.

Dr Clough could not guarantee that I would pull through the surgery without further disabilities. While that is not what I wanted to hear, I understand. He has also referred us to an oncologist at KU, Dr. Sarah Taylor. We need to call her today.

I'm leaning toward the surgery. I want to live. I want to survive. And I want to marry the love of my life. While it appears that will not be anytime soon, it will happen someday. Dr. Clough would like to get the surgery scheduled for a couple weeks out. My hospital stay would be between 3 - 5 days, depending on any unplanned issues that could possibly surface. I think the surgery will be at St. Joseph.

(since I've having pretty major problems with word finding and typing, I'm telling my mom what to share in this blog update...and probably any future ones)

Thank you to everyone for your love and support! I'm determined to get through this... and as my little sister say's... "I will Survive!"

February 15, 2010

My support system

While I have many friends, I learned this past weekend that my best support will come from my brother and sister. Todd willingly traded rooms with me so I could be back upstairs, AND, he devoted the weekend to moving stuff and painting my room (which also included recruitment of some of his friends). My sister made it home (which I truly believe only happened because God interveened... there was a snow storm in Dallas resulting in most flights being cancelled) and Hannah helped me organize all my stuff. It was a bit embarrassing because I had collected so much crap over the years. Todd and Hannah, THANK YOU! I love you.

Here's a photo mom took before everyone headed back to school. Todd normally has hair on his head. This weekend he and his buddies went bald to show their love and support of a dear friend that is battling stage IV lymphoma. How cool is that?

February 14, 2010's the worst part

There's something going on in my brain and I want to know exactly what it is. My peripheral vision is getting worse. If you think about the hands on a clock, when I look straight to the "12", I can not see anything past "2 o'clock". This makes it a little difficult when you're out walking the malls. Yes... I found myself walking into several things.

Today at church, the lighting was causing throbbing to my right eye. Yes, something is going on.

Hannah returned to school today and upon her departure, Dad handed me a letter from her. A letter which I tried to read, taking 15 minutes to get through the first 2 paragrahs, so I set it aside so my Mom could read it to me later. Yes, something is going on in my brain that wasn't there only a month ago.

Hannah's letter was very touching... she reminded me to not let my tumor define me. That my heart and passions define me. She reminded me to stay strong. And she listed the following scripture...
"Do not be anxious about anything, but in prayer & petition present your requests to God" Matthew 6:34

And.. she has given me a my "theme song".. can you guess? "I Will Survive!".. here's a few of the lyrics

Go on now go walk out the door
Just turn around now
'cause you're not welcome anymore (aka...Tumor)
weren't you the one who tried to hurt me with goodbye
you think I'd crumble
you think I'd lay down and die
Oh no, not I
I will Survive
as long as I know how to love
I know I will stay alive
I've got all my life to live
I've got all my love to give
and I'll survive

Tomorrow I'm off for another MRI. Tuesday I'll meet with the dr. Stay tuned... I'll update you on Tuesday with the news.

At this point I'm also thinking that I should move up my wedding date. I'd really like to have my hair when I get married... and the only reason we were waiting was to give me time to finish school.... There's a lot to consider.. things such as are my doctors covered on Greg's insurance plan. Is there a preexisting condition waiting period, etc. I hate the fact that I even have to factor in practical things like insurance....

If you're wondering how I'm doing, I'm scared shitless. At the same time I have a peace about it...and I hear that heaven is a better place.

February 12, 2010

A note from my Mom, Sandy

Little did Bob and I know that as we were beginning to think that life was just about perfect, all kids in college doing very well, Bob enjoying his job, Lindsey engaged with only one year left in school, that our life was about to change.

For those who have known our family for awhile, you'll remember that in November 1998, Lindsey, our oldest was diagnosed with a brain tumor. One that brought on sympstons of lethargy in the right side causing her writing to be slow and her competitive soccer skills to become clumsey. After a short time of observing Lindsey, a call was made to the dr. Lindsey at the time showed no typical signs of a brain tumor (which usually consists of headaches, nausea, and seizures.) We fought that fight and won... but only after 3 long years of treatment which left Lindsey partially disabled on the right side and cognitive skills were hampered. Lindsey has an incredible story to tell... I will leave that up to her.

Life was going pretty good for Lindsey as she was approaching her last year of school and she recently became engaged. Plans are underway for a May 2011 wedding.

Then, in January 2010 a series of events began. First, Lindsey expressed frustration because she was having difficulty following instructions provided by the professor. Something as simple as writing down a phone number could not be accomplished without several repeats. The second event occurred 2 weeks later when reading from a kindergarten book during a substitute teaching job, could not be done without placing the book directly in front of her eyes. Even then, the words did not flow smoothly. The same week, a car accident resulting in tagging the mirror of a parked car. One week later, another accident.... turned the corner and did not see the parked delivery vehicle on the right. Vision on the right side was blurry. A recent trip to the optometrist reported that vision was fine. You get the gist... things were occurring that had not occurred before. We called the neurologist and within a couple of days an MRI and EEG was scheduled. The results are showing that the tumor had returned. This time in a different place, and it's not looking so pretty. Rather than being well-defined, like the last one, this one looks more like a spider web.

Next steps... another MRI on 2-15; appt with the dr.on 2-16 to discuss next steps.

Many people ask how Lindsey is doing. Her emotions range from being extremely angry.... she's been through this and thought that since she made it past the 10 year mark without any signs of returning, that she was home free, to extreme sadness, to out right fear. She knows that what she is dealing with is bad. The fight will be hard. The likelihood that this will be a life-long fight is very probable.

So... we wait... and we get ready for the fight. The family is together this weekend and we're preparing. The bedroom is being refreshed with new paint... in any color Lindsey wants. New bedspreads are purchased and friends of siblings are coming over to bake and paint some art-work for the room. Todd's buddies (Adam and Michael Hill.... who is currently undergoing treatment for stage IV lymphoma) helped paint Lindsey's room. While there was a time in my life where I would of never let anyone but a professional (or Bob) paint the walls in my house, I find myself cherishing the imperfections. This was an act of love, an act of caring, and they did a beautiful job. Our friends are busy praying. Many have dropped off cards, food, a tiger stuffed animal, sent flowers, etc. We are blessed and we appreciate the many acts of kindness and support.

As we go through this, I'm reminding myself that God is good and to look for his goodness daily. That is very difficult to do when you see the fear in your childs eyes that I saw in Lindsey this week. Yesterday the goodness was seeing the love shown between Lindsey, Todd and Hannah. Today the goodness was seeing Todd and his friends come together to paint Lindsey's room. It was also seeing my sister, my neices (Kelsie, Megan, and Erin) and my friend Vicki make time to help Lindsey shop for new bedroom items and join us for dinner.

He is there and He will help us get through this. Please pray for Lindsey.