Thursday, June 28, 2007

More good news

So the doc called today and said my CT looks good and I shouldn't be concerned about the node in the left armpit. He actually read off the entire report but of course the kids picked that exact moment to get into a fight and Alex was crying so who knows what he read. All I do know is that he isn't concerned about the node - at least for now (to quote the pessimist exactly).

I put a call into my radiation doctor since he actually looks over the films and doesn't trust the tech reports alone. Hopefully he will call today and confirm the good news. Only bad thing about the radiation doc is he doesn't always call back right away so I could be waiting on his call for some time.

Of course I came to terms with the possibility of bad news last night around midnight. Everything was put into perspective when I stumbled upon a bloggers site from another blogger I check in on. To sum it up there is a girl that was diagnosed around age 9 and is now in college - she has been living with HD for more than half her life. If a kid can cope then what the hell am I complaining about? Even if the cancer comes back (is it really gone?) it's not like it will take me overnight. I would have enough years to leave my mark on the little z's.

So am I in remission? I know they won't ever tell me I am cured but at least declaring remission would be cool. I guess I better slow down before I get ahead of myself.

I have another PET in 8 weeks. I better get used to these follow up tests because my doctor says he wants to follow me very closely. Aren't I special. I don't know if my mom will ever be able to handle all these tests and waiting for the results. She is always the first person to call and see if I have heard anything ......better yet she calls before the test to see when I might possibly find out. I can only imagine if it were my kid so I have learned to restrain myself from to many smart ass comments.

So I get to go on vacation with some good news. I am also headed back to work PT at the end of the month. I haven't been to work for almost a year. Ready or not - life goes on.

Wednesday, June 27, 2007

Had my test today and it was uneventful as always. Good news is my port is still working like a champ and no clots to report.

I should have the report back tomorrow. Hopefully some good news before the kids and I head off on vacation to my dads then the beach with the Zeitlin clan.

Wish me luck.

Sunday, June 24, 2007

The next big test is Wednesday. Is that a node I feel or is it my imagination getting the best of me? Can they space these tests out any farther? As impatient as I am, marching to the beat of the medical worlds drum is growing really old. Let's hurry up already and get this test over with.

Music definitely gets me through all this stress. I am obsessed with the Pearl Jam song "I am Mine" right now. The part.....

The north is to south what the clock is to time.
There’s east and there’s west and there everywhere life.
I know that I was born and I know that I’ll die.
The in between is mine.
I am mine.

Pretty much sums it up - all we have is this in between time. So for now I am spending my time hanging out with Dave and the kids. Really what else can you do?

Thursday, June 21, 2007

Follow up on Alex

Alex's pediatrician called late last week and reviewed his test results from Children's Hospital. He has a grade 2 urine reflux and the doctor recommends that we test his urine every three months to make sure he is still infection free. He will NOT have to be catheterized every three months instead they will have him pee in a bag. Our doctor is very much against catheterization and will try collecting urine with a bag first. Alex will learn to love this guy once he can comprehend what is going on. We will have to monitor Alex's urine for about 2 years.

So hopefully he can remain infection free and away from that awful test at Children's forever. None of this however slows down Alex. He is getting a lot better at pulling himself up and contemplated taking a step this morning.

Lee's preschool had their end of the year party and presented him with a graduation certificate. I still can't believe his is going to kindergarten in the fall.

I have developed a cough and the doctors want to see me at Hopkins. It is either a side effect from the radiation or I caught it from boating in the bay. I am hoping it is just from the boating but will see what they say. If it is from radiation they mentioned wanting to use steroids. I HATE steroids and will avoid them at all cost. My test is next week to see if the cancer moved. Keep the prayers coming that it is nothing! I just don't think I have the energy to battle this cancer anymore. I just want it to go away for good.

Tuesday, June 19, 2007

Father's Day

We spent fathers day weekend on the boat. Dave's brother and his kids joined us on Saturday and then Sunday it was just the five of us. They absolutely love the boat and have graduated from just swimming while we are anchored to riding the tube. Dave and I both spent a ton of time on boats as little kids. Thanks to my uncle Keith I learned how to ski young and anticipate that Lee will be wanting to try it out next summer. I guess I will have to get back out there and water ski again so I can teach him how to do it.
Alex likes the boat as long as his needs are being meet.....he even napped on the boat Sunday. He likes hanging out in his float in the water and watching Lee and Charlotte goof off in the water.

Alex is by far my most rambunctious child. He gets into EVERYTHING. He is not content with his toys at all and won't be entertained by the pots and pans in the kitchen while I am cooking. I can't leave him out of my sight for a second.

We are going out to my dad's for the 4th of July. I seriously doubt I will be able to get Lee out of his pool the entire visit. There are a lot of cousins for them to play with so I am sure we will have a blast.
Here are some pictures Paul took of the kids on the boat.

Thursday, June 14, 2007

Alex crawled in the bathtub! I did not know that was possible but he was chasing after bubbles and went nuts. He also dunks his head and drinks the bath water. This kid is a trip.

Wednesday, June 13, 2007


Charlotte does not have a UTI - rather she got an owie on her leg that hurt when she went to the bathroom. GEE WHIZ the girl is a drama queen. We also had a bit of a power struggle getting her back to school. She finally went back today (Wednesday) but it didn't go down easy. Charlotte is definitely my most stubborn child and she knows exactly how to push my buttons. I love her but we have our moments.

The kids and I joined the pool so we can beat the heat this summer swimming. Also a good source of entertainment while Dave is travelling. He is gone pretty much gone every week on business travel. We miss him but are managing just fine. At least he is home on the weekends.

Alex is busy crawling and getting into everything. He doesn't want to play with anything I put out for him but instead goes for electrical cords, books, and big kid toys. He has is own agenda. He has had his own agenda since the day he was born. Lex does what he wants to do when he wants to do it.

Monday, June 11, 2007

Another UTI

I think Charlotte has a UTI and we are headed to the doctor today to get her tested. I can't manage to shake these doctor appointments and need to resign myself to the fact that 3 kids means someone will almost always have something going on. Charlotte is miserable and refuses to use the potty - she holds it in forever until she cannot any longer and it is a mad rush to pee. Hopefully the pediatrician can get her on some pain medication and antibiotics quick today so she feels better.

While I am at the doctors office I can get the follow up on Alex so at least I am multitasking!

We spent Saturday on the boat. We anchored in a small cove and swam in our life jackets. Alex loves the boat and enjoys swimming in his float. Lee and Charlotte were fish and we had to drag them out of the water at the end of the day. Dave and I were talking and really our kids don't have a choice about liking the water.....we both love it and it is just apart of what we do. Lee told me the other day when he grows up he is going to have a pool big enough for all his friends and family to swim in. He also wants a power boat and sail boat. Hopefully he does really good in school.

I am having technical difficulties getting the video of Alex crawling online. As soon as I figure it out I will post the file. I also have great footage of Lee and Charlotte on a slip and slide. They almost destroyed Dave's nice lawn but it was well worth the fun.

Wednesday, June 6, 2007

Good news

Today Dave and I met with the radiation oncologist and good news - my original cancer (in my neck, chest, and right armpit) is gone. These are all the places they treated with radiation and it definitely worked. Unfortunately there are 2 nodes lighting up in my left armpit. These are new and have never previously lit up on any scans. They are small and my doctor thinks they might be active due to the recent shingles infection that was in the same area. They want to do a CT scan in 3 weeks. If that scan shows growth then it is cancer. If the scan shows shrinkage then it is from the infection. I vote for shrinkage and the infection. If it is cancer he definitely says he can radiate since we have never radiated in that area before. He also said the side effects would be really low in that area. I guess the rads to my chest were a bigger deal and I am through the hard part. If it is cancer I suppose we have a lot more questions to ask and concerns about the cancer moving around. But I am definitely thinking this is from the shingles and I am hopeful this cancer crap is done once and for all.

I was a wreck this morning and wanted to jump out of my skin waiting on the report. The radiologist that reported the PET scan actually screwed up her decimal point and reported that the 2 nodes in my left armpit were much larger. Dave and I started thinking I was facing a bigger more aggressive cancer. Thankfully my radiation oncologist reviewed the scans and quickly called her for an explanation and reamed her out for the error. Talk about a roller coaster ride this morning.

Dave and I are so happy. Yes we have to wait a little while more to find out about the new area but I am just so overjoyed that the major stuff is gone. Finally my cancer responded well to treatment. They can't call me radiation resistant!

It is like my life has been handed back. I am no longer on pause. I can exhale. I can see a glimmer of life that isn't dominated by cancer.

Without a doubt I am certain that all the prayers, meals, kindness, and support from everyone helped me get this good news today. I couldn't have done it alone.

I am full of gratitude and thank god for this wonderful news.

Tuesday, June 5, 2007

Alex urinary tract infection update

Alex and I went to Children's Hospital today for his urinary tract infection follow up. They performed a ultrasound to see if his kidneys and bladder are developing correctly - yep!

They also did a VCUG which is a horrible procedure involving a catheter up his penis, xray, and strapping a baby down to a table. We are promptly erasing the entire experience from our memory. The test did show that he has reflux - when the urine in the bladder flows back up into the kidneys. The radiologist will write up his report and then we will consult with our pediatrician regarding treatment. From my research the treatment (if any) is largely dependent on the grade (1-5). From the preliminary info the radiation doctor said it sounds like Alexs grade is low and he doesn't have reflux caused be any structural problems. The overall worry is that if left untreated the reflux will cause scarring and problems with the kidneys.

So good news that he is developing correctly and good news that his reflux is probably the type that can be treated with daily antibiotics if even that.

I also read online that sibs have a 1 in 3 chance of also having urinary reflux even if they have not demonstrated any symptoms. From what the research says they recommend sibs getting tested as well. I will wait to see what the doctor says. I cannot imagine doing the procedure with Lee and Charlotte. It is almost better that Alex is so young because he isn't aware of what is going on and forgets quickly. Lee and Charlotte on the other hand would fret over the test and remember the pain.

I guess Alex's reflux could just be because of my chemo - or at least that is what my mommy guilt is saying in my head.

I get my test results back tomorrow morning. A week full of doctors and hospitals - what fun!

Friday, June 1, 2007

He is crawling

Alex is crawling. To be exact he has learned how to sit up on his own, crawl, and begin to pull up all in one week. I think he finally figured out that being on the move is to his benefit. Lee and Charlotte promptly exclaimed that now he could get their toys! He also is learning how to wave bye bye, say hi, and give kisses.

This is one of my favorite ages. He is such a cutie. I will post the video of his crawling later this weekend. We are off to my moms place for the night to swim and take advantage of grandmas company.

Enjoy the weekend.