IT HAS BEEN TOO LONG

I can happily say that you haven’t as many posts from me because I have been BUSY with regular home life – kids, dogs, laundry, grocery shopping…you get the picture. My point is that I have had the energy to keep up with all of these things. I have even been able to go back to the gym the past 3 days. I may only walk on the treadmill for 30 minutes (and climb 3 sets of stairs to check the kids in the childcare area) but its a far cry from what I was able to do a few months ago.

I have been home almost a month and see my oncologist weekly for blood draws and checkups. My blood counts are returning back to normal levels – which is the main reason for my increased energy. The aftermath of the chemo has not come without side effects though. Since I have been home, I still experience hot flashes and being extremely cold (especially my feet which are FREEZING all of the time). I also have neuropathy (sensation of your hands and feet tingling and falling asleep) and joint pain. The joint pain has really set in the past week or so – everything just seems to hurt when I move. I feel like an old lady.  I’ve read about both of these side effects and they both supposedly get better as time goes on. I sure hope that is true.

I do check back into the hospital (I’m pretending that I’m checking into a fancy hotel) on Monday for my first round of maintenence chemo. Best case scenario: I am in the hospital for 6 days – receiving chemo on Day 1, 3 and 5 for 12 hours at a time. As long as I don’t get fevers or any other major complication/side effects, I get to go home after the 6 days. You can bet that’s what I am hoping for. I am not looking forward to the hospital food and being hooked up again, but its obviously well worth it. My oncologist is hoping 4 rounds of maintenence chemo (spread out with around a month inbetween treatments) should do the trick. And I say all of this with the reminder that “things always change”. I am not positive what is in store for me, but that is the basic game plan.

Of course there will be more to come…the hospital gives me more down time than being here at home. For some reason, a 4- and 6-year-old seem to keep me quite busy! (wink, wink, smile)

Ava's Thanksgiving Feast

I guess Ava and I could have taken a better picture….

Grady Thanksgiving 2013

 

Hope everyone had a great Thanksgiving!

MARVELLOUS

A neighbor gave me an easy-reading fiction book called A Tiny Bit Marvellous by Dawn French. We could all use a bit of “marvellous-ness” in our lives, right? Its a British comedy about any normal family that has an impossible teenage daughter and a gay teenage son. I am sure we can all relate in one way or another. It has made me grin because the mother in the family goes on multiple tirades regarding normal family catastrophes and worries – such as birthday parties when her kids were little. (Yes, it starts even before Kindergarten and it gets competitive.) Which mom can throw the best birthday party? Who has the best entertainment? Who found the PERFECT party favors? (You know there’s always that one mom that hits the nail on the head year after year.) That’s when all of us regular moms throw in the towel.

The funny thing is that 6 months ago, planning a birthday party for Ava was a huge daunting task for me – and I tried to make it as simple as possible for myself. (The kids all went swimming at LifeTime and a dear friend Malene did the gift bags for me. All I did was show up.) The doctors can’t say how long I had leukemia before I was diagnosed, but I probably had it back in May (which is when Ava’s birthday is.) That’s where all my energy was going. The good part? I feel like I could plan a birthday party right now. I have a lot more energy and stamina. Maybe Grady’s party can reap the benefits of how good I feel these days! Oh wait, his birthday is 2 days before Christmas. He almost always gets screwed out of a birthday party because its so close to the holidays. #MomFail – I shouldn’t have had him so close to Christmas.

My mom left Monday morning back to her regular life in Florida. (Back to The Villages – a huge master-planned retirement community, a Disneyland for adults. Just ask her and she will tell you ALL about it.) So, for two days now, I’ve been back on kid-duty. You don’t know how good it feels to know you can operate in your normal life after you’ve been in the hospital for 2 months. You get very insulated (and possible bed sores) when you are laying in a bed all day for that long.  But, we’ve made it to school 2 mornings in a row and they weren’t left at school yesterday afternoon. (This afternoon is still up for grabs.) In all seriousness, it may not seem like a big accomplishment, but in my life right now, it is.

I head to the doctor later this week for blood work and to schedule my next round of chemo – which will put me back in the hospital. As of now, doctors plan on giving me 4 rounds of maintenance chemo. The maintenance chemo lasts for 5 days and I should be able to come home inbetween treatments as long as there are no complications or fevers.

Well, I am off to clean bathrooms and do laundry – more parts of everyday life. It may seem boring, but to me, its MARVELLOUS that I can do these things! Oh and if you have ideas for a 4-year-old birthday party, let me know. I just realized it is about a month away…poor kid! I’ll get it right one of these years!

HAPPY BIRTHDAY TO ME

Well I celebrated my 32nd birthday on Monday. I love having my birthday on Veterans’ Day. It always guaranteed me a day off of school or work and it made me feel really cool growing up. Birthdays take on a different feeling as you get older though. I think it hits around some time in your 30′s. It doesn’t have to be right when you turn 30 – but somewhere in that decade you start to realize you’re old. Anyway, I had a really nice 32nd birthday. I wasn’t in the hospital – so that’s a major plus right there. On Sunday, Dave and the kids took me shopping at Fashion Show Mall and I added to my Lululemon collection. On Monday, I was treated to my bone marrow biopsy that I worked myself up about – and rightfully so. It HURT. But I came home from the biopsy to homemade lasagna, chocolate cupcakes that the kids helped make and a house full of pink streamers and balloons (Barbie & Spongebob balloons.) Did I mention the 2 ziplock bags full of individually wrapped painted rocks from our backyard? Thank you Ava. They are now a filler in the bottom of one of my vases and I actually need more painted rocks! I need to get that girl back to work!

The good news of the week came on Thursday. I got the results back from my biopsy. I tend to hesitate when I say that I am going in for tests or about when the test results come back because even though the doctor tells me one thing, it always seems to end up changing. Fighting leukemia (or I suspect any type of cancer or other disease), never has a set treatment plan. There’s an “idea” of what the plan is going to look like, but it rarely turns out exactly as one would expect. So, the bottom line is that Dr. Shopick (my oncologist) believes that I am in remission (she didn’t see any blasts (leukemia cells) on the slides from the biopsy. I still have to go for 4 more rounds of maintenance chemo. As of now, (remember this can always change), I am free to stay at home the next 2 weeks (I better not get any fevers or catch a cold). Then my doc wants to admit me back into the hospital  the beginning of December. This chemo will last 5 days long (24 hours) and after the 5 days, I should be able to go home and relax for the next 3 weeks before they hit me again with more poison. Luckily, we can do all the chemo at Camp Summerliin (I miss them there) and I won’t have to go out of state. If I needed a bone marrow transplant (which my brother Braydon agreed to be a donor early on), then I would have to go to UCLA for that. Of course I would do what is best for me, but its really great I can stay in Las Vegas to get treatment. Anyway, its very hard to get into a routine or commit to much in regular life because I know I will be out of commission in 2 weeks and I’m not so sure exactly when I will get out of the hospital.

Late Friday and Saturday nights used to be filled with drinking, clubs, concerts, performances, fights…Yes, I was that girl. We always got lucky and we would find out secret musical guests, be handed free football tickets (let’s face it, Sorry UNLV you aren’t that exciting to watch – check out a Big 10 school and I will enjoy watching that), seeing 1D (One Direction for any of you living under a rock) and almost front row tickets and a meet with Justin Beiber…

Beiber & Girls

Lilly & Ava at 1D

Lilly & Ava at 1D

And….Ava got a special mesage from Carlos and James from Big Time Rush (BTR). This kid is SO lucky that she has been able to go to all these cool events and meet her idols from tv shows- something that didn’t cross my mind when I was 6. (She bettter remember all of this when she turns 16 and wants a new car.) I think I went to my first concert in like my shopmore or junior year of highschool – that’s about 15 years ago or more – and I certainly didn’t have any meet and greets!

Other exciting news in the life of a leukemia survivor (who is not completely out of the woods yet) was that I volunteered at Ava’s school today. I helped out Mr. G. (Ava’s teacher) with stapling, cutting out lamenates and I did some grading of papers. I haven’t gottem sick from the germs of 20 1st graders yet. Let’s hope it stays that way.

I came home from school still feeling like I have energy. (First day without a nap). I started cleaning/organizing/donation. Its hard because stuff is just stacked placed and I need to get it all sorted and get rid of the stuff that we really don’t need anything. It’ll get done!

So if I am quiet the next few days, it means I am cleaning, organizing or throwing more crap away.

I’M HOME

I actually got to come home on Halloween afternoon and went with to take the kids trick or treating. I was so tired after that walk around the block. I think I need some conditioning to build up my endurance a bit. I was ONLY  in the hospital for 57 days (or 8 weeks and 1 day). I guess I could cut myself a little bit of slack.

Ava as a Pirate Princess

Ava as a Pirate Princess

Grady as a Pirate

Grady as a Pirate

Since I have been home, I have really been taking it easy. I went with for swimming lessons at Lifetime on Saturday morning and I have gone along to drop off the kids at school and pick them up. I have even taken some pretty good naps.

Grady & Mom Napping

(By the way, Grady WASN’T TIRED and he was WASN’T going to take a nap. Ahh…4 year olds…)

So, you are probably wondering how all of a sudden I got to come home! It was mid-morning on Thursday (Halloween) that my oncologist came into my hospital room and told me I could go trick or treating that evening. I was really in shock. We had gotten the results back from my bone marrow biopsy and they were pretty good. My blood count numbers were also high. The doctors’ goal, in general, is to not keep you in the hospital. Sometimes your house can be cleaner than the hospital. Imagine that.

I had an office visit with the oncologist on Monday where she did more bloodwork. She was still pleasantly surprised that my body is making its own platelets and my white blood count is over 3.0. (My WBC was down to 0.2 at one point during my first round of chemo.) I am still at a risk for catching something (having a somewhat depressed immune system) but my body is in a better position to fight off a cold now than it was before. I am still a germaphobe and use Purell on myself, Dave and the kids non-stop. Better to be safe than sorry.

The plan is to do more bloodwork tomorrow and I will have another bone marrow biopsy on Monday. The results of that biopsy will tell us if there are any leukemia cells left. This determines whether I will continue on with maintenance chemo or if I will have to get a second opinion at UCLA. These treatment plans are all up in the air until we see the results and we see how my body continues to react. I am lucky right now because I have had no other side effects other than being tired. (And who wouldn’t be after coming home to a 4 and 6 year old and 3 dogs?)

It does feel great to be home. I am getting back into the routine and starting to begin to help around the house (laundry, helping with homework, and I am thinking about doing some cleaning today.) It just feels nice to have a purpose instead of being stuck in a hospital bed all day and night long.