Thursday, December 27, 2007

Christmas lights

I have been meaning to post pictures of our tacky Christmas lights. I took them last night in the rain....real quick....since I realized I had to take everything down today. Pictures don't do them justice since you need to drive by to see the true tackiness of everything; the light fence Dave built, our many plastic reindeer, Santa, and snowman, the inflatables, lights, twinkling stars, rope lights, and lets not forget the candy canes. I want to hit the sales to acquire more stuff for next year but Dave is complaining about the electricity bill. I am trying to talk him into LED lights to be more environmentally correct but he isn't buying it.


Enjoy





Thursday, December 20, 2007

off again on again

So my steroids ended last week........and the coughing began. Not that much of a surprise to me since it takes me FOREVER to get rid of anything. A nice little factoid I learned about myself while battling cancer. Anyway I literally slept 12 hours Sunday night and 12 hours Monday night with doing nothing in between. That much laziness and serious pressure from Dave was enough to make me call the lung doctor. Happily I am back on my steroids and feeling more energetic and coughing less. My lung doctor is out of the country (yes even doctors have a life) and his stand in made the call. I will have to see my dude when he gets back to the states and do more breathing tests. He did however warn me last visit that my BOOP might come back after I stop the steroids so this isn't out of left field. He also said it takes some people longer to recover - again that would be me given my track record.

I feel safe on my steroids and daily antibiotic. I know I can't be on them forever but I also have some gut thing saying it's not the time to stop.

Dave is actually home and was a huge help while I was laid up for 2 days. He is also getting me used to his help around the house, with the kids, the dog, and yard. I told him he needs to stop because I am going to be cursing him when he leaves again for essentially 2 straight weeks of travel in Jan. It's just easier to stay into my routine of doing the house/kid drill solo - that way I don't ever think I am missing something. Yep it's Heather crazy logic.

Some sad news - my mom lost a dear friend, my aunt lost her dad, and an old coworker of mine lost her husband all in the beginning of this month. Just another reminder that life is precious. I am eternally grateful to god for what he has given me. I hope the kids and I can enter into this holy season with that in the forefront of our minds. I don't want to forget what I learned while staring at death's door. I pray that I have the strength to continue living in the moment and not take the lessons I learned for granted.

So the good news is we will celebrate Christmas (the kids are counting down the days) and fly to AZ to visit my dad. Yep life is good.

Monday, December 10, 2007

another year older

Yes I celebrated a birthday last week - exciting 33 years old. Since 33 really isn't anything monumentus I wasn't all to jazzed. My mother on the other hand keeps reminding me that I should be excited about any birthday since I wasn't assured of them this time last year. Point well taken.

Unfortunately I am getting a bit of my cough back since I am just about done with the steroids. Hopefully this is all normal and nothing to worry about. I go see the lung doc on Wednesday and get a chance to vent my concerns. I just don't want this BOOP to return so if that means another couple months on steroids (and another 5lbs) so be it!

The holidays are in high gear with us. Since Dave celebrates Hanukkah we have been lighting the lights each night. My mom's 60th birthday is this Saturday with Christmas soon after.

We also are planning a trip to AZ to see WVU in the Fiesta Bowl, visit my dad, and celebrate Lee's birthday with the Smith clan. I dread the flight but will LOVE the nice weather. It is rainy and cold in MD. We already had our first snowfall last week - yuck. I don't like the winter.

Friday, November 30, 2007

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.

Tuesday, November 27, 2007

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!

Wednesday, November 21, 2007

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!

Monday, November 19, 2007

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!

Friday, November 16, 2007

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!

Wednesday, November 14, 2007

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.

Monday, November 5, 2007

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.

Saturday, November 3, 2007

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.

Tuesday, October 30, 2007

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.

Monday, October 29, 2007

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.

Friday, October 26, 2007

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.

Monday, October 22, 2007

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.



Thursday, October 18, 2007

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.

Sunday, October 14, 2007

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.

Thursday, October 11, 2007

family picture

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


Wednesday, October 10, 2007

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.

Sunday, October 7, 2007

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.

Thursday, October 4, 2007

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?

Thursday, September 27, 2007

What a weekend!

I am back home, off the job, and on oxygen support. It all started last week with me feeling bad then snowballed into a visit to the ER. My O2 counts are down again and I have to sport the oxygen tanks all the time. I feel like crap and I am hoping the oxygen will help turn things around soon.

I am trying to get in to see a pulmonologist but they must be the rock stars of medicine because it is nearly impossible to get an appointment. I am waiting on my oncologist to pull some strings and get me in before November - yep November is the earliest I could manage.

I don't have pneumonia so that is good news. However I am worried about what exactly is causing my breathing to be in the toilet.......again this is where a lung specialist comes in.

I am actually pretty worn out and discouraged. I can't take much more of this sickness and I need a break from playing the patient. I am sure Dave and the kids are just as sick and tired of all this crap.....we just need me to be 100% again. Something I have no clue will ever happen again. Depressing to say the least.

Good news is my sister is home and in town for almost the entire month. So I have some help when Dave is out of town. Thank god for family.

Monday, September 24, 2007

We had a good weekend. Lee and Charlotte both started soccer so we have that filling up Saturdays. I also finally talked them into attending Sunday school and they had fun. Alex had no problem going to the nursery so Dave and I enjoyed church service in peace and quite. It feels good to be back at Church - it has been a while since I have been sick. I am hoping to get the kids baptized this fall. I just need to make the classes.

Dave is going out of town for a week and my sister is coming to stay with me. The kids and I are really excited to have her back in town and moving to the USA. They already want to take the train to NYC to visit her once she gets a place.

Alex is almost walking. He is taking about 5 steps and can get to a standing position from just sitting on the floor. I doubt it will be much longer before he is walking everywhere and getting into even more stuff.

Medically my sinus infection is still hanging out. I stopped my IV antibiotics so I am waiting to see if it gets worse. Hopefully not and it just goes away soon. I am done with doctors.

Monday, September 17, 2007

Delay in surgery

Yep they called of the sinus surgery due to my crappy lungs. I can't say I am disappointed I was dreading the surgery and recovery time. Since the cancellation I have spent 2 full days with doctors, nurses, technicians and I still don't have the final say on my lungs. I did get all my pulmonary function tests done today at the hospital so we have progress. Now I just need the pulmonologist to clear me to have surgery. I am hoping that my infection will clear up by then and I will be done with the whole shabang!

We had wonderful weather here in DC so Dave and I spent the time doing stuff outside with the house and kids. We spent the night down at my mom's and Dave and I got to go out. We also saw Dave's grandmother who is in town for her 85th birthday. The kids are very excited to celebrate her birthday next weekend. I think they are itching for some cake. But I must admit I have created party hounds. They love the balloons, cake, decorations, and even making the invitations.

Once I get this infection taken care of I should be able to enjoy a nice relaxing fall. The next PET isn't until so November so I hopefully I can get a break from the whole cancer sickness routine all together.

Tuesday, September 11, 2007

I haven't found the time to post with my new schedule. Once I get home and finish taking care of the kids I go straight to bed. No time to ramble on about my medical issues or the little z's anymore.

My medical stuff is the same. My counts dropped pretty low but the are on the slow rebound. Enough to avoid a bone marrow biopsy! Anything to avoid a biopsy in my book. I am scheduled for my surgery this Friday and I am currently taking my IV antibiotics at home. I am tired but what is new.

Alex is taking about 3-4 steps but not walking. Maybe in the next month he will let go and walk all the time. I have mixed feelings about this - knowing Alex he will find more stuff to get into as a walker.

Charlotte is now the oldest in her preschool. Unlike Leland who loved the attention from all the younger kids at preschool Charlotte is annoyed. She wants to play with and whomever she wants and not be disturbed. She also talks about being a teachers helper.......I think she desires to be in kindergarten more than Lee. When he gets on the bus in the morning she always talks about how she will run on the bus when it is her turn to go to school.

Lee is doing great in kindergarten. He has made friends in his class and on the bus. He loves his teacher and desperately wants to learn how to read. Amazingly he will begin to get homework this October. They definitely don't waste time with kindergarten anymore.....it's serious and not nap/snack hour like I was accustomed too.

Dave is in town this week but gone again next. The business is doing good I assume. Now that I go straight to bed and he is traveling alot we mainly see/hang out on the weekends. I will post more after my surgery.

Monday, September 3, 2007

Busy week

It was definitely a busy week for all of us. Lee had a great first week of school. He loves his teacher and has made a couple of little friends. He was nervous about the bus on the first day and actually ran the other way when it pulled up. But with Dave's help he got on and rode off to school. He loves the bus now and pesters me to no end in the morning about not being late.

Alex's had a good first birthday. He was tired and barely made it through his cake. We blew up a ton of balloons and put then all over the basement for him to play with. He had the entire (local) family over for his 1st party. He is taking step and we guess will be walking in the next couple of weeks.

I am back at work part time. My co workers are great and the transition back has been good. I am pretty exhausted when I get home but hopefully my energy level will pick up the longer I do this.

Medically my ENT and Oncologist have decided that I should have sinus surgery. My sinus infection is still hanging out and won't go away. They will put me on IV antibiotics administered at home - then schedule the surgery for Sept. 14. I have talked to a ton of people that have had the surgery and it shouldn't be too bad. They say you are back to work about a week afterwards. It sucks I have to go out of work after just getting back but I just can't control everything can I!

Dave was in town the entire first week of school and back to work for me. He leaves tomorrow and I get my first taste of doing all this solo. Should be an interesting week. I will post pictures of Lee and Lex as soon as I get them downloaded.

Friday, August 24, 2007

No more O2

That's right I am off the oxygen tank - yipee! I had my 6 month post SCT (transplant) appointment today at Hopkins. My lungs quote still sound like crap (my doctor is young) but I am breathing better and he got that damm monkey off my back. My PET scan shows the sinus and lung infection but other than that I am clean as a whistle. My counts are dropping again so I have to go back for a follow up in two weeks. He is also concerned about my meds from the ENT and I have to monitor my fever now that I am finally done with the steroids. I must admit I will miss them since they give me a nice pick me up to deal with the kids. My energy is in the crapper without them.

I will get scanned again in three months. He actually said he will scan me every 3 months until May of 2009. A little overkill in my book but Dave is happy they are following me so closely. I guess since I had THE crappiest of lymphomas then I get special attention. I mentioned that I know some fellow HD patients that get Valium around scan time and he was ready to whip out his scrip pad and hook me up. I am not ready for the drugs just yet. Hopefully they will get easier and I won't loose sleep, have the nightmares, and worry for about a week. If that doesn't end I guess the drugs would help. Especially since going back to work and taking care of the little z's isn't going to allow for a week of scan crap.

Lee meet his teacher today and thankfully is the same teacher he had his evaluation with in May. We also saw his room, seat assignment, and took the whole school tour. He is ready to go and I think getting a little excited. I think mom and grandma are more anxious and emotional about this Monday than him sometimes. I always thought that Alex would be the hardest since he is the baby but sending Lee is not a walk in the park.

Things are going well and I am thanking god, knocking on wood, and counting my blessings.

I will post pictures Monday of Lee's first day and pictures Tuesday of Lex's birthday.

Thursday, August 23, 2007

Clean scan

A surprising turn of events. My doctor called ME this morning; when does that ever happen.

He called to let me know my scan was clean! No lymphoma to report so I am still cancer free. Great news! I still go up tomorrow to see if I can get off the O2 tank and check my blood counts. All the infections and little crap are a breeze - as long as I am cancer free.

Have a great weekend.

Waiting for results

I had my PET scan last Friday and I am waiting for the results. Dave and I go up tomorrow (Friday) morning to meet with the doctor and review the scan. Dave was out of town earlier this week and I have been busy with the kids. We are gearing up for school, getting ready to go back to work, and Alex's birthday. Monday starts a new chapter for all of us.

I am having crazy dreams about the test results. I am actually not getting much sleep between nervousness about the scan, Lee coming in to sleep with me, and Alex waking up wanting a bottle (he is off the baba for good). Hopefully the results are good Friday and I will get a good night sleep. Dave can deal with Alex and his fits for a bottle.

I will post the news tomorrow once we get back from the hospital.

Wednesday, August 15, 2007

Tubes, scan, and Alex

Okay so I got the tubes today. My ENT assured me that it would 1) help me hear 2) drain my fluid behind my ear drum/help my infection and 3) not make me miss Alex's birthday. Number three is my biggest issue. I will be there for his first birthday come hell or high water. I have missed enough of this little guys first year I won't miss the birthday. The hearing I have learned to deal with. Amazingly I can already hear better and did as soon as he put the tubes in. Now everything is so loud!

Number 2- I still have my sinus infection and the extra time on the antibiotics did squat. My infection actually go worse. The ENT also thinks whatever is going on in my sinus is definitely draining down into my lungs and holding up the show in that healing too. Since I am still on the O2 I gather my lung infection isn't completely gone. I need to get a pulmonologist and get all this sorted out. Better yet I need a good general practitioner to help me with everything. I have way to many doctors, doctor appointments, scans, follow ups, and medical issues these days. I just want to go to one person that knows what the hell they are talking about and refers me only when necessary. Is that too much to ask? And oh yeah I don't want this person to reside in Baltimore!

I am actually going to call back up to Hopkins tomorrow about my scan this Friday. Since I have all this infection going on right now why the hell do I need to get this PET? It is going to be skewed by my lungs and sinus - so can we just skip it for now? Or do I really need to go through another false positive ordeal again? I remember last time my oncologist did this and it sucked. I guess if I light up life a freaking Christmas tree then okay it makes sense. But instead it will be this whole gray area crap that we will have to wait for the next scan to sort out. So why not just skip this one? I doubt he will agree with my oversimplified logic and not let me off the hook but I have to at least try. God I would hate to be a doctor and deal with pain in the ass patients like me.

I was thinking about my recovery time and how I still need to rest (be that turtle) right now so I can get on with life. You would think not working would present itself with this abundance of time to rest and relax. But I have found between my doctors appointments and the kids I get about 1 or 2 days a week of actually resting. Yesterday was my one day this week and I actually got a nap. Next week Dave is out of town again so I am back to single parent mode. Oh well, it is what it is.

I think Lee got these pictures of Alex in bull dozer/king kong mode. He doesn't just play with toys he thinks he needs to climb and stand on them. Enjoy!

Monday, August 13, 2007

7 year itch

Dave and I celebrate our 7th wedding anniversary today. I don't think we are itching, at least I am not, but maybe I should check in with Dave to see if he is feeling squirmy. Since we have been together 13 years I always feel like our wedding anniversary is kind of a sidebar. I still can't believe the guy I meet in Morgantown, at a party, when I was 19 yrs old is the guy I ended up sticking with, having 3 kids with, and loving to be with so much. Dave is by far the person I have a blast with, hands down, any night of the week. We have have fun doing just about anything together or nothing at all. I hope my kids find someone they fit with as much as I do with their dad.

I won't sugar coat things here however. This cancer bull s#&t has tested us. We have our issues, we fight, we probably could use a couple of sessions on the couch to deal with the residual of these past couple of years. Who wouldn't? But I am impressed at how well we have gotten through everything. I guess Dave takes his vows seriously when he said in sickness and in health. Looking back I was insistent on that line since my mom had been sick with breast cancer. A little foreshadowing on my part perhaps. Hopefully the years of sickness are behind us and we can have the rest in health. I scanned some pictures of us in college, Atlanta, the wedding. A nice blast from the past. I wonder if this would intrigue my husband enough to actually visit my blog?

























Update on the medical stuff. Tomorrow is my follow up ENT appointment. My hearing is actually getting worse and I can't hear in my other ear now. I imagine my ENT will want to do the tubes. I called up to Hopkins and they suggest waiting to do the procedure after I am off the steroids. Since steroids lower your immune system and masks any fever.....blah blah.... Fine by me I am pretty much against the tube idea and want to wait. I just see it as another possible set of complications and don't want that right now. I am feeling more tired since my steroids are tapering off and guess that my congestion is getting worse because of the taper as well. I just want to play it safe, rest, and take the antibiotics in hopes that it will go away. I will not do anything to jeopardize being present at Alex's first birthday. If that means avoiding the tubes and dealing with this hearing loss then so be it. I REFUSE to miss another kids birthday.


Thursday, August 9, 2007

My bones

I had my Bone Densitometry yesterday. I thought I would pass with flying colors since I am a pretty good milk consumer. Well I guess I was wrong. According to the test I am Osteopenic. The tech who did the test said my gyno will be in touch to go over what we need to do about this. I did some reading last night on the web and I guess my results are very typical post transplant. However there are not a lot of studies or recommendations on what meds, if any, people like me should take. I guess a call up to Hopkins on this one wouldn't be a bad idea.

The one thing I can do is increase my calcium intake to 3 servings and get some exercise.....once I am clear of all these infections.

I need to go back an dig up the consent forms I signed pre transplant and radiation. At least then I can refresh my memory and be prepared for all these things that keep popping up. I am still thankful to have my clean scans. I guess I am just surprised at what a number the transplant and rads did to my body. When your doing the consents you will just sign anything to save your life. Now it's like I am out of this survival mode and I am going back and dealing with the residual. Still it is a better place to be in then fighting for life.

Next I need to get my eyes checked.....that probably won't be as straight forward as I assumed. Nothing is straightforward with my health anymore. Maybe I should just start ignoring this stuff and avoid the doctors. Ignorance can be bliss.

Tuesday, August 7, 2007

I have been visiting my local doctors a lot lately and it is weird to see them and give them the past year in a quick update. My medical history is getting way to long. It is nice however to say my last scan showed I was cancer free.

I have my next PET scan scheduled for Friday, August 17. This scan will be about 7 months post transplant and 3 months post radiation. It will be nice to get another clean scan and a break from Hopkins. I couldn't have asked for better doctors, nurses, and care but I just want a nice long break from that place and any sickness.

I am feeling better. I just keep trucking with my oxygen and pills. People definitely stare at me in public. You would think after all the months I got stares with my mask and baldness I would be used to it - still not. I think it is my age that freak people out. It is like they don't want to see a mom my age sick. I guess the way I hate seeing the baby's and kids up at Hopkins.

Once more doc appointment this week then I am free and clear until next week.

Sunday, August 5, 2007

Hearing update

I visited my ENT on Friday and I do not have permanent hearing loss. Rather I have a sinus infection that is causing fluid to back up behind my ear drum. My ENT put me back on the antibiotics my oncologist just took me off of. The drugs helped with my pneumonia but I need to stay on them longer to clear up the sinus infection. If the antibiotics don't resolve the fluid thing they will put a tube in. It is a wait and see for about 2 weeks. There is a good chance I will have to have the tubes but I am hoping not since it comes with a set of possible complications I don't want to take. Anything that is straight forward for the majority of the population is so not for me. My immune system and body are just beaten up a bit and I need to take as many precautions as I can. Oh well - slow and stead is my game plan. I am a tortoise.....repeat...don't get ahead of yourself....you are a tortoise. I think this mantra will keep me from any more hospital stays.

We had a great weekend with the kids. Alex is getting so BIG. He is everywhere and closer to walking each day. We have finally decided for his birthday we will fill the house with balloons. He is obsessed with balloons so this will make him happier than any present we can think of.

Thursday, August 2, 2007

I am back from Hopkins and it is official - I don't have valley fever. Just pneumonia. My oxygen levels are better but my doc wants to keep me on the O2 for another week then check again. I am done with my meds for the pneumonia. I am still on the steroids and I guess my immune system is at higher risk due to them. So now it is a wait and see if I spiral back into sickness in which case I call the docs asap. Also need to resort back to less public interaction maybe until I get of the steroids.

My hearing loss is the next issue to deal with. I have my ENT appointment tomorrow so hopefully we can get to the bottom of it fast. My oncologist said it is a possible side effect of everything I have gone through, including these latest meds, but it is rare. So I am thinking I just have some infection/blockage my primary doctor couldn't see.

Oh yeah I also got the official report that I am in menopause. At least I only suffered for a couple months with hot flashes. Not too bad considering many women go through years of crap. Does this mean my over the hill party can be moved to 33 instead of waiting around for 40?

So I am resting in between raising the kids and going to endless doctors appointments. I feel better but not 100%. I guess I haven't felt 100% in long time. It is funny since people see me and always say how great I look....what a little bit of hair and a suntan does for your overall appeal in society.

I will post tomorrow about the hearing loss. In the meantime my oncologist said no swimming. Do these people not understand I have a fish for a son? I guess they didn't give me a scuba tank anyway so why do I ask these questions? I always forget my limitations and just want to do my normal life.

Tuesday, July 31, 2007

Fast forward to my rocker

Today as I dropped the kids, went to the doctor, and ran errands with my oxygen tank I realized I am on fast forward to my twilight years. This all began before the pneumonia when I went to the gyno for my yearly check up. I have been tested to verify early menopause, they want to do a bone scan for osteoporosis, do the baseline mammogram, and check out my ovaries. Next I land myself this lovely oxygen tank to sport around town. And finally the kicker is I am having problems with my hearing. I went to see the doctor today and she doesn't think its ear wax as I suspected but possible hearing loss. I go see my ENT on Friday to get to the bottom of it. So potentially I could be a 32 year old women with an oxygen tank, ear aide, and on estrogen. Dave's response was hurry up and go get your teeth checked so we can avoid dentures. Gotta love my husband.

This is all just comical. It cannot be anything else at this point. If I don't laugh then I might stop and really think about everything then loose my mind. I can handle the physical but I insist on keeping my sanity.

I will let everyone know whats up with the hearing as soon as I find out. But in the meantime speak up when you see me and please no smoking, static electricity, or open flames near my tank. I would hate to cause and explosion!

Saturday, July 28, 2007

Home

I am happy to be home. Alex and I both got back to the house yesterday afternoon. Dave made us pasta for dinner and we all sat at the table for a meal - FINALLY!

The doctors sent me home with oxygen support. My oxygen levels are good when I am sitting still and mildly active. Once I really start moving about they drop so the oxygen helps. Hopefully I can get my lungs cleared up by my appointment next Thursday so we can get rid of the tanks and machine. Having the oxygen stuff in the bedroom isn't ideal. Plus nothing like mommy making pancakes with a tank on her back. Sometimes I just stop and marvel at what the hell this cancer stuff has done to my body. Lee of course thinks all the tanks are super cool and want me to use them all the time.

We are talking about what to do for Alex's first birthday party. Actually we are debating the theme. Dave wants Dinosaurs or Bulldozers. The kids and I want Winnie the Pooh. Once Alex starts talking these discussions are going to get interesting. I don't think Lee and Charlotte are prepared for him to have an opinion. And knowing Alex he is definitely going to express himself - the boy isn't shy.

Have a great weekend.

Friday, July 27, 2007

Going home

Finally they are releasing me. Oddly enough I had the nicest room for this hospital stay; a corner suite overlooking the inner harbor. Maybe they saved the best for last and I shall never return.

So I had my second bronoscopy yesterday. I don’t remember a darn thing and love the anesthesiologist. The docs got what they needed and again it is a waiting game to see if any valley fever grows. In the meantime, I get to go home and wait for any fungus and bacteria to grow in the depths of this hospital. I can’t imagine having that job. My cough is getting better and I can breathe sitting around without oxygen assistance so there is no need to keep me. My oxygen levels drop a bit when I am active so I think they are going to hook me up with a tank at the house. I have to stay on my meds for a couple of weeks and have some follow up appointments and scans. I suppose I need to follow doctors and mom/dad/mom in law/dad in law orders to chill out for while. It is always hard to chill when you have 3 kids at home. Thankfully Alex’s daycare provider is back next week and preschool is open. I can squeeze in some downtime in between kid duty.

I am still striving to get back to the office – at least part time. I feel like it is this last hurdle I need to jump to get back on the path of normalcy. Not to mention I have the best co workers/office/director in the world to be so darn patient with me. It would be nice to go back and actually do my job for them.

Dave is home for about a week before he has to travel again. It will be nice to have all 5 of us at home for a little while. It seems like summer is slipping away and Lee will be off to kindergarten way too soon. When did my baby get old enough to ride a school bus without me?

Wednesday, July 25, 2007

I am back online thanks to the best father in law in the world! Dan brought me the connection today and I finally feel like I am connected to the universe again. What did people do before the internet?Thanks to my sister for doing the quick update all the way from Moscow. So my pesky little cough that worsened after vacation has turned out to be pneumonia. I have the Bone Marrow Transplant Team, Infectious Diseases Team, and Pulmonary Team all on the case to figure out what the heck is causing this infection. Is it fungal or bacteria? Could it possibly be Valley Fever? With all these white coats you would think I would have an answer after 6 days in the hospital – but nope not yet. I get to get my second bronoscopy (spelling???) tomorrow afternoon. Hopefully they can get a good piece of this crap from my lung, set it in a dish to grow for a couple days and get a final diagnosis. My first procedure was a bust – the usual not enough pain/twilight meds and I woke up during it feeling like they were suffocating me to death. Fun times! Tomorrow they promise to knock me out.Of course the timing of this hospital stay was awful and I missed Charlotte’s 4th birthday. I get the award for worst mom of the year for this stunt. I missed the pool party, decorations, cake – all that priceless stuff you just can’t get back. Dave and the kids are managing. Lee of course is most aware, sensitive, and upset. Charlotte is saving me a piece of cake. Alex is hanging out with Louise since his daycare provider is on vacation (jeez again with bad timing). So my hopes of returning to a normal life and work on Monday are down the tubes. The doctors will barely give me an estimate on when I am getting out of the hospital let alone a date to return to work. I really didn’t expect this hospitalization and thought my time in the joint was way behind me. Just when you think you are out of the woods………So back to baby steps and hoping my procedure tomorrow goes well and I get home for the weekend. I will deal with the rest of my life after that.

In the Hospital Again

For all of you wondering where in the world Heather is ... she was admitted to the hospital last week for a lung infection. Despite having been in for nearly a week (and sadly missing Charlotte's fourth birthday), the physicians do not know exactly what type of infection it is or what to do about it. The possibility of lung cancer was raised and then discarded (THANK YOU GOD) and now the physicians are trying to rule out the possibility that Heather contracted Valley Fever when she visited Arizona at the beginning of the month. I doubt it is Valley Fever, because my understanding as a former Arizonan is that one would have to go dirt biking in the desert and maybe lick the desert floor in order to contract this - but, hey, I am not a doctor. Given that Heather hates staying in the hospital, she is pretty frustrated with the lack of both a diagnosis and prognosis. I think comic relief is the order of the day so give her a ring on her cell if you have a second! Michele

Monday, July 16, 2007

Home again, home again.....











The kids and I are back from our vacation to my Dad's in AZ and the OuterBanks with the Zeitlin clan. I think we are all happy to be home in our own beds with familiar surroundings. Only thing that sucks is our AC died while we are away and I had to bunk at my moms for a night. Of course the AC went out while Dave was out of town....why does everything happen when Dave travels?

We had a wonderful time hanging out in the pool in AZ, seeing all the cousins and just relaxing. Lee and Charlotte's swimming ability has greatly increased from all the time we have spent in the water this summer. They dived right into the pool the first night we arrived - straight off the plane. I think it was about 11 PM our time but it didn't stop them from swimming.

My cough continued throughout my trip to AZ and upon my return my docs put me on steroids to help repair my lungs. I guess all that radiation has damaged them and I need to get on the mend. The drugs are helping but the cough is still lingering a bit. I hate steroids but must admit I will trade in taking them for clean scans any day. My radiation oncologist confirmed that the nodes in my left armpit did not grow and he feels that they are nothing to worry about for the time being. We can write it off as inflammation from the shingles.

So I am resting up before I return to work and trying to get rid of this cough. It is worst at night and in the morning. Not the best time to be hacking while I am trying to deal with the kids. I go back to Hopkins Monday for a follow up on the cough, my counts, and oxygen levels. I just want to get this all taken care of so I can get back to work and have a normal energy level again.

Charlotte Marie celebrates her fourth birthday this Sunday so I need to hurry up and get into bday mode! I will post more pictures of the beach later.



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

No UTI

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.

Thursday, May 31, 2007

almost there.....

so I must admit I am counting down the days until my test. So many people have asked if I am nervous - not really. At this point I have done my job and the test results are going to be what they will be. I am just anxious to get the thing over with and have the results. I have placed a freeze on any heavy thinking, planning, or worrying until after the tests. I sort of feel like it is a waste of time to make any decision until after next week. I just have to ride this wave until it lands me on whatever shore is my destiny.

My hair is growing back faster than I expected. Charlotte associates my hair growth with recovery and gets excited every day that mommy has hair. I wish it was that simple. Hey maybe it is and my cutie pie knows something I don't.

A recent picture of the pink lady.

I pray she, Alex, and Lee never have to go through any of this cancer bull shit.

Thursday, May 24, 2007

Long weekend

Dave and I will enjoy the long weekend with the kids. Dave actually gets a break from work and all the travelling he has been doing.

Lee and Charlotte have been taking swimming classes and are eager for the swimming pools to open up. Luckily my mom has a pool at her place and Louise has a beach in her community. Plenty of free swimming to fill the summer months.

I am still focusing on enjoying the moment and not stressing about these looming tests. Gratefully the weather is awesome around here, I have a yard full of beds to plant, and 3 kids to keep me busy.

Enjoy the holiday weekend.

Monday, May 21, 2007

Creepy crawlies are gone

We are a lice free household again. I will have to treat the kids again before the weekend to make sure everything is dead but we should be in the clear. All of their teddy bears are clean and some came out of the dryer with a new hairdo.

I am trying to remind myself daily (hourly) to chill out during these few remaining weeks before my PET scan. The test is always out there looming over my head. When people ask how I am doing it's kind of like - well we find out in June if all the treatment worked. Essentially over one years worth of treatment will either pass or fail come this June. I can't say enough how much I pray this journey with cancer is over. I am quite honestly done with cancer. I don't want to talk about it, go to the appointments, get any more treatments - none of it! I am such a pain in the ass when I have to go to Hopkins now. I am sure they feel the same way about me - let's get here the heck out of our hair.

I know a couple people that are gearing up for mini transplants and I cringe at the thought. The mini is what the docs recommend if my PET comes back poorly. It would require me living in Baltimore near Hopkins for 2 months. Definitely not the way I plan to spend my summer vacation.

I will continue to try to chill out, enjoy the kids, Dave, and life. What will be will be - no sense in worrying about it.

Thursday, May 17, 2007

Lice

Charlotte and Lee have lice! Someone from school had it and it spread to the other students. Let me just say lice is mother natures way of making you do 50 zillion loads of laundry! Their room looks so bare since I removed all the stuffed animals on their beds. For those of you who have been here you know that I am not kidding when I say I filled 4 trash bags full of stuffed animals. I don't know how they sleep with them but they do. They are already requesting them back and I just finished up the loads of their bedding and pillows.....my kids don't have any patience. Like mother like son/daughter.

Luckily Dave, Alex, and I have been spared.

So the kids are home from school hanging out playing while I fold endless amounts of laundry. Still better than going to Hopkins!

Monday, May 14, 2007

Test results are back for Alex and he is free of infection - great news. So now we just have to get him evaluated at Children's in June. I am holding out hope that this was just some simple infection and there isn't anything major wrong with the little guy.

I was at Hopkins today and my counts are coming back up. My liver functions are also good and my shingles are almost gone. I shouldn't have to go back up until June for the PET scan!!!! I am so sick of the drive, getting blood draws, and just the entire scene. A break is long overdue and I am thrilled I get some time away.

I am pretty fatigued lately so I plan to rest up and relax until the tests in June.

Thursday, May 10, 2007

Update on Keith


For the family here is an update from Linda on uncle Keith -


Keith is home.....His back is very tender and it spasms. For the most part he will be able to function on his own. He will be off work at least 8 weeks maybe longer. It will take us a couple of days to get the house comfortable for him. He has a removable cast but really needs to wear it except when he is in bed. Right now he needs my help to get the bugger on and off. I know as the vertebra heal he will be able to do this himself.......I have attached pictures of the explorer. Keith's comment to your Dad when he first came to the hospital was Heather shouldn't get all of the attention!