Tumor Board of Review

Well tonight Dr. Jensen called to let me know the results of the Tumor Board Review meeting today. They reviewed my scans and discussed my case and he just wanted to share the results with me.

First of all he said that the board's consensus was that they really think this is treatment related and not new growth. He said that is what they are leaning towards. He told me that the two tests...a Profusion MRI and a Spectroscopy....should give us more information than we currently have. I found out what these tests do.

The profusion MRI shows the blood flow in the brain so it will show less blood flow if the irritation is necrosis since dead tissue doesn't have much blood flow and active brain cells do! Then the Spectroscopy shows the metabolic activity of the brain and would show differing results depending on if there is a growing tumor or dead tissue in there.

Either way it seems like these two tests, in addition to my routine MRI scan should give us a good picture of what is going on.

Anyhow, I thought this was so interesting yesterday but my head was spinning and I couldn't get all the info together cohesively. Now that I've spoken to Dr. Jensen again I feel like I can make more sense of it all!

Well, That's all for now!

My Brain Beats To It's Own Drum

Ok, so you've heard that before about people haven't you? People that have their own way of doing things. Well I feel like I have MY way of wanting to do things and my brain has its way of wanting to do things. In other words, I think my brain is beating to its own drum. I wish it would let me be in charge..but unfortunately it is not cooperating with my plan.

So, here's the update:
Good News: There are no new tumors! Yeah! That's always a relief! So we are grateful that although annoying we are still dealing with the same spot of trouble.

The Rest of the News: Basically Dr. Jensen can not tell whether the growth in my brain is radiation necrosis (swelling of dead tissue) or if it is new growth. That is still to be determined.

So this is the unknown. The known issues are as follows:
1. There is a lot of swelling/irritation in the brain that is causing me to have headaches, numbness and a seizure.
2. There is more of this than the Dr. is comfortable with at this point in my recovery process.
3. There is a chance that my brain may absorb the tissue within the next month or so.
4. There is a chance the my brain may not absorb this tissue and it'll continue to irritate me and cause problems as it has in the past.

So, given these known issues, we discussed our options with Dr. Jensen at great length. We finally decided on a treatment plan or plan of action for the next month. Here it is:

I will continue on steroids for the next month. I'll adjust them as I feel necessary depending on my symptoms. If I have another seizure I'll start on anti-seizure drugs, for now I'm spared this drug, which I'm so grateful!

June 21st I will have a follow up MRI, as well as 2 more detailed MRI tests that I haven't had done previously. Taking all these tests will help Dr. Jensen to make a more educated guess about what to do in July. Depending on my symptoms and the results of my scans we'll decide what to do going forward. One of these two decisions will be made on June 22nd:

1-If things are progressing positively and my brain looks better--we'll continue to watch it and hope it will resolve itself, aka my brain needs to absorb this tissue!

2-If things do not improve or get worse, or the detailed MRI scans show definite growth, aka cancer cells, then I will most likely be scheduled for another Crainiotomy --Open Brain Surgery--in July. The purpose of this would be to remove the tissue causing these issues. It has to leave my brain somehow so if it doesn't do it on its own then we have to force the issue.

So there you have it! I don't know what more to say....these are the facts...I'm trying to soak it all in! I'm trying to be realistically optimistic.....but realizing my Brain's past behavior I'm not too confident in its future behavior, so that isn't reassuring. Who knows though? Maybe my brain will decide to finally listen to me...after all, aren't I really the boss?? =)

Thanks for all the continued support and prayers!
Love, Heidi

Heidi's Health Update

I hate these type of posts. Why can't all my posts be cute photos of my kids or backyard projects and that sort of thing? Things that are fun and cheery and happy? I wish I didn't have to post these sorts of things, but since so many people are caring and concerned I figured I should update the blog.

About two weeks ago I had a pretty bad seizure. It really caught me off guard because I hadn't had one in over 6 months, more like 9 months since I had been medicated on anti-seizure drugs before my brain surgery. The seizure caused numbness in my entire right side and left me unable to communicate during it. Scott gave me my anti-seizure meds and after sleeping off the worst headache of the century, I finally could talk and think again. The next three days were filled with headaches and sporadic weakness on my right side. My Dr. said that unless I had another seizure we'd just wait until June 1st for my planned scan.

The reason for this is that there was less than 10% chance that I'd have seizures again 6 months after my 2nd radiation surgery, so he wasn't totally surprised by my 'episode'. He figured I was just textbook for this 10%tile group. Later that same week I still hadn't had any seizures but I called and requested an MRI since I felt uneasy about waiting until June 1st.

Today I received my results back from this scan. The news is that my scan does look different than it did in March (my last healthy scan) and that the Dr. can't tell if its just necrosis (Dead tissue) or if its a growing tumor. I have an apt. one week from today (my Dr. is in Germany right now) to determine more. I start on a small dosage of steroids today.

I feel like I'm in a cloud right now. It doesn't seem real. I feel as though I'm reading a script of my life from last May and that I'm an actress in the play of my life.

Somehow I have to figure out how to manage with this return to steroids and the possibility of more treatment and I just don't feel strong enough. For the first time in a long time I just feel like "It's not fair!" I really don't want to go through this again. I want to be a normal mom..not a crazy mom. I want to be Heidi, not Heidi on drugs. I have to accept my limitations and its just really hard, really really hard.

Thanks for all the concern and prayers. I'll update the blog next week when I know more.
Love, Heidi

Saturday Work Party

We've started a tradition of having Family Work Parties. We get together with Scott's family that lives locally and we take turns working at each other's home on a Saturday. This past Sat the work party was at our house. The following posts will show you what we worked on together this weekend. Here's a photo of the kids helping scoop bark out of the back of the truck.

Yesterday for Family Night we worked in our garden together. This is the first time we have put together a garden so we will see how it goes!

The kids each planted a few veggies and they are excited to watch them grow!

I just hope we do ok at our first attempt at gardening. I am scared I won't be able to keep the plants alive but maybe we'll get lucky! Wish us luck!

Backyard Mess!

Look at what needs to be done!! All these rocks need to be moved to make room for bark, the junk up top has to be moved, weeds pulled, weed tarp laid down and bark put on top.

The sticking up sprinkler heads need to be changed to drips and the brick wall needs to be power sprayed.

I'm so tired of seeing weeds all along this upper wall!

Our yard is just a modge podge right now..with no shade and the space isn't well utilized.

Backyard Improvements!

Here are some photos of our yard at the end of the day! See the small bush along the wall? The dead one was dug out and the new one was planted in its place. Now our hedge looks complete again! Also, there is compost and bark up top! Yeah!

Everyone helped put together the awning for our hot tub area. Scott needs to raise it and anchor it down but it's looking good! =)

Look at this yard!! No weeds growing out of the wall...no crazy sprinklers sticking up, instead it looks like a yard that has been taken care of!! We neglected it too much last year! (We had good reasons!)

Now we have a patio area!! We bought an umbrella and put up our favorite kid's surf table and now we can put our new patio to use! Thanks to everyone that helped us with our yard on Saturday!

Grateful Reflections..

I've been having some issues with headaches, etc. lately and it's really made me reflect on how blessed I am to have my health most of the time! =) I have have suffered from poor health so much in the past few years that I need to remember to always be grateful when I do have energy and strength.

I have so many blessings and I really need to focus on those and try not to get too frustrated when little setbacks come!

=) Heidi

Thanks for all the Support!

It was so great to be together with all my family and some friends last Saturday for the Komen Race for the Cure! Thanks for all the support you gave me both far and near!
Here are some of the race photos my Dad took of our backs...this is where we listed who we were racing in Celebration or in Memory of.

Scott...

Heidi...

My brother...

My mom..

More Walk Photos

Walking with my brother Ryan...

Walking with Amy and Ryan, Scott, the little boys and Scott's Mom...

In this photo Jason was with us...

Since my Dad took most of the photos he isn't in many of them..but I do have one of him walking with me! =) Thanks Dad for all the great photos!

Little Supporters

Kaylie and Cam were troopers and they walked the whole distance with me. Kaylie had her pom poms and Cam wore the pink "I am the Cure" cape from last year!

Walking in the race with my mom and sister and Kaylie...

Here I am crossing the finish line!

Team Heidi!

This is the Team Heidi photo from Sat except we are missing three people. Jason and Amy hadn't arrived yet since they got lost finding Trax..and our friend Lee is taking the photo...otherwise this was our group!

Here I am with Trish and Carrie..my great gal pal supporters!

They ran the race and then backtracked to find our group. It was great to have them come out to support me too! =)

I'm so grateful to have good friends (both here and in CA) that have supported me through all my crazy drama these past few years!

Girl Support!

Here's some special girls in my life....first my darling daughter Kaylie who participated in her THIRD race with Mom.

Then my amazing sister Amy who has been such a strength to me throughout all my trials.

Here's all the girls in the "Black Family" that parcipated in the race together.

And you can't forget my Aunt Sue..she actually RAN in the race so I don't have a lot of photos of us together but I was so grateful she came out to support me!!

My Main Cheering Squad

Supporting me at the race were all my most supportive cheering squad!!
Here's my siblings and I...it was great to have all four of us together! Thanks for coming Amy, Jason and Ryan!

My parents...another important part of my support system!

Then of course my darling little racers...my kids!

And my most supportive strength and the joy of my life...my Scotty!

Survivor Parade

After the Race there was a survivor Parade. Here is the group I was in...the 1-5 year group.

Here I am chatting with some ladies that were walking near me. I didn't see my family yet but they were up top taking photos!

Here's all the Survivors gathered on the steps...you can see me on the far right..I'm one of the only ones NOT wearing a pink hat, I have a bandanna instead!

See this sign! Look for me behind this sign in about 27 years!!! =)