club Remission

Yep another clean PET scan. Pretty much my birthday and Christmas wish rolled all up into a 2 page print out from Hopkins. I couldn't have asked for anything more. So back again in three months. The next test will be after my transplant 1 year anniversary. I guess if I am likely to relapse he said statistically it happens within the first 2 years. So I am almost to that milestone as well. He also confirmed that indeed I am technically in remission but not cured. They don't declare you cured until 5 years of good scans. Alex will be in school by then. Okay I am getting ahead of myself....I guess good news does that to me.

Today's trip to Hopkins reminded me of way too much. The smells, chemo, bad food, no hair, feeling shitty. I am so thankful not to be in that place anymore. I thank god for giving me a new lease on life - life is good.

Test this week

Just wanted to post that the PET is this Thursday and the results are Friday. Dave is thankfully back in town for my doctor appointment to go over the results. I do not recommend going to these appointments alone in case there is bad news. But mine should be a breeze - in and out with good news!

I will post Friday afternoon with the clean scan results!

Tests moved

Due to technical difficulties my PET will be moved to next week.......just another week to mull, loose sleep, bite my nails, and worry! Why can't Hopkins and Aetna work with me and not against me?

So in the mean time we are gearing up for Thanksgiving at mom's place. The kids are very excited because this means we are getting even closer to Christmas. They are so excited Christmas is coming that I think I need to slow down with Christmas cheer or I will be sick of it by the 25th. When I mentioned to Dave how amazed I was about their level of excitement he reminded me that I am the ring leader. So I am raising Christmas enthusiasts - somebody has to do it.

But back to Thanksgiving - Charlotte wrote the cutest thing at school I thought I would share. The parts in bold she included on her own:

My Thanksgiving Prayer
I am thankful for eyes that see Alex.
I am thankful for ears that hear noises.
I am thankful for a nose that smells soup.
I am thankful for feet that walk.
But most of all I am thankful for my mom and dad and Alex, my baby brother, and Leland, my big brother he's the best.

So that pretty much sums it up. I need to remind myself to be thankful for good health and family. The kids and I talked today about how much better mommy is this year and that we need to thank god for everything he has given us. I hope all this sickness has taught us more than it has bothered us.

Have a great Thanksgiving!

On November 20th it's great food for a great cause!

Don't Forget! On November 20, all Washington Area Baja Fresh locations will be donating 10% of the sales from the entire day to the National Capital Area Chapter of The Leukemia & Lymphoma Society!

Whether it's a quick bite on the go, lunch for the office, or dinner for the family, stop by a local Washington Area Baja Fresh location and help in the fight against blood cancers!
Visit www.bajafresh.com for a location nearest you!

Update on the lungs

I had a follow up appointment with the lung doc to see how the BOOP is coming along. I am officially off of oxygen support! The doc said the BOOP can come back after I am off the steroids. He wants me to continue the steroids for 1 more month and then we will see what happens. Hopefully it is gone for good!

I have my PET scan next week on Tuesday and get the results on Friday. I am thinking positive and am visualizing clean scans with nothing lighting up. A clean scan would be the best birthday and Christmas present ever.

Life rolls on and the little z's are doing great. We are going to mom's for Thanksgiving and Michele will be in town for the holiday weekend. The kids are excited and can't wait to make the gingerbread house I promised with Aunt Michele. There will be plenty of football on to entertain Dave and Lee.

Can't believe the holidays are upon us - ready or not!

SUPPORT CANCER RESEARCH FUNDING!

ASK YOUR SENATORS AND REPRESENTATIVE TO OVERRIDE PRESIDENT’S VETO

President Bush has just vetoed legislation that would provide funding for critical cancer research!

We need your help! Please write your U.S. Representative and U.S. Senator and tell them to override President Bush’s veto of H. R. 3043, the Labor/ HHS /Education appropriations measure. This measure contains important money for both National Institutes of Health (NIH) and the National Cancer Institute ( NCI ) as well as funding for patient navigators. Over the last four years, cancer research funding has fallen more than 10 percent in real dollars, forcing reductions in research grants and critical clinical trials. This measure contains a 3.1% increase for NIH and 2.7% increase at NCI . The Leukemia & Lymphoma Society strongly supports an increase in federal funding for both the NIH and the NCI in FY 2008. The bill also contains $4 million to fund the national Patient Navigator Program. This will enable “patient navigators” around the country to help individuals gain access to and find their way through the health care system.

Finding cures requires research funding. Please help us advance the pace of research to those cures by writing your representatives and urging them to override the President’s veto of this funding bill. A draft letter – which you can personalize – along with the means to send it are at the Society’s Legislative Action Center.

Study for Alex

I heard back from the doctor in NJ that is doing the study on babies exposed to chemo. Essentially they are doing developmental testing on children whose mothers had chemotherapy during pregnancy and will compare them to women diagnosed with cancer who didn't need chemo until after delivery.

Initial findings look good and they hope to show children are doing well so that other women will not decline life saving treatment. I would have given my left arm for this kind of information when I was diagnosed pregnant. None of the doctors could give me any concrete evidence to work with. It was all so anecdotal and such a leap of faith. Interesting how that the faith thing keeps coming up.

So hopefully Alex will pass with flying colors. He will at least get extra credit points for daredevil technique.

The kids had their baptism on Sunday. Everything was lovely and I am so happy we decided to do this for them. Lee has always had a special relationship with god and is very spiritual for a 5 year old. Charlotte was along for the ride and helped me make a cake to celebrate. Alex by far needs some divine assistance. I think he will be sending us to the emergency room with broken bones and such. He insists on keeping up with the big kids even though he is a little tyke. This morning Lee and Charlotte were playing with their star wars light swords and he insisted on playing too. He can barely even hold it but figured out how to whack his sister upside the head. I turned my back on him for a split second to put up a gate so he wouldn't tumble down the stairs and he managed to head plant into the coffee table. I think I just need to remove the thing until he gets older.

I had a great weekend and am enjoying the kids. I am just taking it one day at a time, getting healthy, and hanging out with family. The next PET scan is looming and I always get more kid clingy as a response. I need to think of these tests as friendly reminder to keep my priorities straight in life. Let go of all the bull shit and enjoy what matters most.

Halloween and the rest of the week

Lee had his Halloween parade at school, a party and then we went trick or treating with the cousins.
Pictures of Lee's class, Lex trick or treating, and Lee/Charlotte with Dad on Halloween night.


The kids seem to be home more than at school lately. Our school system (smartly on their part) schedules a teacher work day after Halloween - so Lee had to stay home. He was quite annoyed that I ran errands all day and he had to come with. He seriously thought I sat at home all day and watched tv. Granted I am supposed to be resting more than running around but seriously we all know how good I am at resting - I suck at it.

The kids get baptized tomorrow at church. They are excited and Dave and I are happy to be getting them on a spiritual path. My church has been wonderful to me and our family during this cancer ordeal. We all feel so welcome and at ease there. My sister, mom, and Dave's mom are coming to see the service. Charlotte and I made a cake tonight to celebrate afterwards. Charlotte keeps saying she is going to church tomorrow to get a bathrobe. I have no idea where she got it from but she is clearly confused about how much water is involved!

Medically I am tapering down on the steroids more. I lowered my dose today and really felt the difference. I actually slept in and let Dave do morning duty. I always do morning duty since I like the mornings, breakfast, and Dave is a pill when he doesn't get sleep. I have such a love hate relationship with steroids. They are definitely making me swell. It's like I am retaining water and I am puffy - that is the hate. But I love the energy they give me. Oh well I guess you can't have it all. I need to work on getting my energy up naturally with exercise and a good diet. All in time I suppose.