some pictures from the party

Alex hanging around outside the bounce - waiting.....




Finally he gets to go in and is so happy. He loves to bounce.

Me and Michele at the end of the party sitting down and relaxing - wow I look tired. And boy is my face getting puffy from these steroids.







Charlotte Marie is such a princess.


Lee looking worn out in the bounce.

Pregnant with cancer

Heavens no I am not pregnant plus remember I am cancer free! The transplant took care of that bitch of a cancer and my fertility. Yep Dave escaped the vasectomy.

Back to the point....the pregnant with cancer doctor that I used as resource during Lex's pregnancy called. She has some funding for a new study and would like me to participate. Just go the message so I will post once I get some details.

The message brings back all the memories of his pregnancy. The sono's, doctor appointments, chemo, early delivery - those were some tough months. I don't think I ever worried more in my life. I put all my energy into delivering that little guy safe and sound. Thank god it worked.

I hope I can help out some other women that are pregnant with cancer. Least I can do since so many have helped me along my way.

Halloween party

This was our 3rd Halloween party for the kids. Of course Dave and I didn't take any pictures or video so we will have to rely upon family and friends to send in pictures. I am positive Dave's mom got a ton of pictures and will post some once she emails them over. My sister, mom, and Dave's parents helped pull it all together and I couldn't have done it without them. Seems like everyone had a good time and we will do it again next year.

I am focusing on resting this week. I have to go get another PET scan in a couple of weeks to make sure the cancer is still gone for good. Since my oncologist wants to check me every 3 months I better get used to the anxiety of test time. My doc has offered up some meds to deal with anxiety.......I don't think I am there yet and hopefully will never need it. It is nice to know that it is out there just in case I start loosing too much sleep.

I also get the lungs checked again in a few weeks to make sure the inflammation is on the decline. So with some rest and relaxation I should be getting closer to the goal of 100% healthy by January.

In the meantime life goes on. We get to trick or treat this week, eat candy, hang out with family, and enjoy some more nice weather in the DC area. Life is good.

stay at home mom

So I resigned from my job this week. It was a very difficult decision for me. As you all know my mom raised me to be very independent and I have always worked. Depending upon Dave for our sole income is a bit scary to say the least. But the latest set back with the lungs really threw the kids for a loop and I had to make the decision that my full time job needs to be getting healthy. Next after that is taking care of the kids.

My employer (BNQP) was fantastic throughout this whole ordeal and I cannot thank them enough for their generosity and support. Not to mention all the other Federal employees out there that donated me leave.

Another part of my resignation decision was that I have no clue when I can return to work. My lung doc recommends that I don't work if I don't have to. My oncologist always suggested that I don't go back until 1 year post transplant. I can't even imagine when I can get back to a job full time.......so this is the best decision. I cannot expect my office teammates to just sit around and wait for my return indefinitely.

My director was very understanding when I resigned and super supportive. Again, the staff at BNQP was the best. I guess it just wasn't in my cards to work right now. I tried but at this point my health has to take importance.

So I guess this makes me a stay at home mom for now. Hopefully I can stay on this path of recovery, get my health to a 100%, and then worry about a career again. I have learned a couple of things throughout this ordeal. One is to just take it a day at a time. Another is that nothing is forever. So no need to mull over this too much. Things are what they are -I can always have a career again in the future.

We had a busy weekend.



Lee's soccer ended and he got a medal for his hard work. He is very proud of it and showed it off to everyone he saw. Alex is actually pretty good at kicking the ball around too and Lee's coach told Dave he is a natural. I personally think he has the personality for football but only time will tell.



We also went to a fall festival on Sunday with Dave's family. The kids helped work in the yard all week to earn money to spend on games. They had a lot of fun. I on the other hand thought it was way too hot!!!! The weather here in DC is crazy warm and nothing like our typical fall. We were all wearing shorts at the pumpkin patch. Since radiation treatments, or the chemo, or maybe the transplant (who knows) I get very tingly (in a bad way) when I get hot. I thought my tingly days were behind me when October arrived. Nope - yesterday I was miserable with those darn tingles. Dave is loving the warm weather since he despises winter but I was complaining the entire drive home. Dave definitely married the wrong women if he wants to retire to Florida.




Charlotte was happy to pose for pictures and I got some cute shots of Lex. He was trying to pick up the pumpkins and carry them around.

Lex is such a blue eyed blondie....he could easily be my sister or aunt's kid.
So I am recovering from the weekend and getting ready for our 3rd Annual Halloween Party next weekend. We are expecting a big turn out. Hopefully the kids have a good time and it doesn't rain.

BOOP

I had a good appointment with my doctor yesterday. All the tests are in from the broncoscopy and I do not have any infections in my lungs. I am responding very well to the steroids and my lungs sound better. I can sit around and not need the oxygen support but once I get up and start moving I need the help.

Since he didn't do a biopsy this time he isn't 100% on the diagnosis but he is leaning towards Bronchiolitis Obliterans Organizing Pneumonia or BOOP. He thinks this is what I had back in July as well and it returned recently because I was not on the steroids long enough. So this time I get to stay on the steroids for about 3 months slowly tapering down starting this Saturday. The breathing can get worse if I taper too quickly or it just might come back period. We will have to wait and see. I think around turkey day is the time frame that I need to be mindful of things. I will have to tell Dave to keep an eye on me around then - I am always the last one to see my self going down the slippery slope of sickness.

My next PET scan is coming up in November. I would like to skip these test forever but I suppose that wouldn't be looked upon kindly by the oncologist. I just want to assume the big C is gone forever and be done with everything.

feeling better

i managed to keep up with the family part time this weekend - much better than before I got in to see the lung doctor. i even went on a walk to the playground with everyone. i am back to those little steps again. hopefully i can keep the good momentum going and ditch these oxygen tanks again. i begin to taper the steroids later this week......another test to see if i can sustain a decent lung function on my own.

i have to call up the ent this week and see about getting these tubes out of my ears. i am sick of not being able to get my ears wet. such a pain in the butt.

the kids are doing good. alex is walking everywhere now. charlotte is giving dave and i a run for our money with her stubbornness. lee is doing great in school and getting really good at soccer.

my mom and sister are still helping out tons with the kids and feeding us. any weight i lost with this recent set back will quickly be put back on with my mom's cookies.

family picture

a nice family picture we took back in september......

steroids

so the steroids seem to be working or is it the antibiotics - who knows. i am still dependent on my oxygen tanks to help with the breathing but my cough and congestion are leaving. so it might be because of the antibiotics but we will find out soon since the course ended yesterday.

my sister says i look better today then i have these past few days. i am sure all the help she is giving has improved my health. i get a full night sleep, she deals with the little z's in the morning, and does the dreaded lunches!

so i am back in my waiting, resting, waiting, resting - slow down game.

i visit the doctors again next thursday for a follow up. i think my home health care folks come today too to check my breathing. will be interesting to see if it is any better.

dave is coming home tonight from a week long business trip. the kids are very excited and I am too. we miss him.

thank god that is over

So I had my broncoscopy on Friday. I will be happy if I never have to have another one of those again - but I am not getting my hopes up too high. It went okay. Basically I was shaky coming out of the anesthesia. The doctor was debating admitting me but once I caught wind that he was on his way back to check me out I pulled my crap together so I could go home. I promised Lee that I was coming home and I couldn't break my promise. With Dave being out of town the kids are super sensitive right now. The know I am sick and Daddy's gone - not a good mix. So I got home Friday and slept the rest of the day away and got better.

The doctor called Friday night and essentially he said the tests don't show pneumonia. I do have a minor infection, not sure what, put he put me on steroids plus 2 antibiotics. I started the steroids yesterday morning and am enjoying the minor steroid buzz. It definitely helps with my energy level. So the doctors thinks it's a return of the radiation inflammation. If the steroids don't work within 2 weeks then we have to discuss other invasive measures to see what's going on in the lungs. Pretty much they would have to cut me open.

So pray the steroids work! If they do work I stay on them for 2-3 months.

Right now my goal is to get better for the kids annual Halloween party at the end of the month. I managed to throw it last year in the middle of chemo so I should be able to get my act together medically this year. I will definitely recruit my mom to bake up a storm and help decorate.

My mom and sister have been a lifesaver. With Dave gone I have no clue how I would have managed without them. I can't thank them enough.

Lovin the pulmonologist

My oncologist pulled some strings and got me in to see the pulomonlogist at Hopkins yesterday. This doc is wonderful and answered all my questions. In a nutshell he thinks the radiation pneumonitis is back but first needs to do another broncoscopy to rule out any possibility of infection. He does not think it is a cancer recurrence so that is great news.

He scheduled my broncoscopy for tomorrow morning and will call with the results that evening. Assuming he is correct and I don't have an infection he will put be back on steroids for about 2-3 months. They even set up general anesthesia since we all know my track record with "twilight" drugs.

There are a lot of "if then" scenarios he went over but I will spare everyone all the details. I just pray he is correct and that the steroids resolve everything. He said not to push myself physically and call him immediately if things worsen. He sounded like he was riding the fence on just admitting me to the hospital since my O2 and breathing is so bad. At this point I would agree with the docs about just going to the hospital to get everything resolved but I know my kids cannot handle another hospital stay. Especially with Dave out of town - they would freak out.

So with Michele's help we are holding down the fort. She is getting the kids off to school/daycare and picking them up. Mom is carting me back and forth to Hopkins. I feel like it is winter all over again.

When will this end?