MD ANDERSON, HERE I COME!

I have great news. I have had an eventful day and look forward to tomorrow. A very gracious, generous and kind family has insisted that I go to MD Anderson in Houston, TX for a second opinion regarding my AML. For those of you who don’t know, MD Anderson is a leader in leukemia treatment and research. It is also one of the largest cancer centers in the United States. I count my blessings that I have the opportunity to get a second opinion here. A BIG thank you goes out to Jackie and Cary for making this possible. I guess to put in the most simple terms, I can’t express my appreciation enough.

After lots of convicing, we are here. I had a first by flying on a private plane today – and let me tell you – that’s the way to fly. (I am sure I don’t need to convince any of you out there.) There was no waiting in security lines, no dealing with tiresome TSA agents or and no waiting for our plane to leave. We walked out onto the tarmacc, the pilots loaded our luggage onto the plane and we took our seats. It took an exact 3 hours from Las Vegas to Houston. Talk about easy!

Texas is two hours ahead of Las Vegas, so it was pretty much bedtime by the time we got to the hotel. Of course I can’t sleep because I anticipate a big day tomorrow. I have been fortunate enough to get an appointment with a top oncologist, Dr. Cortes (who I am told is a well-respected and well-known doctor in the leukemia and cancer field.)

I know tomorrow will be a long and tiresome day. It will be filled with meeting Dr. Cortes, blood work, another bone marrow biopsy (not looking forward to that), x-rays and CT scans. We hope to be done by 5 in the evening. Maybe when we are done, it will give us an opportunity to explore Houston. Neither Jackie nor I have been to Texas before, so it should be quite the treat. However, we did leave our cowboy hats and cowboy boots at home. I hope that wasn’t a mistake. It is rainy here and should be for the next 3 days – which is how long MD Anderson has prepared us to stay. We are typical Las Vegas girls – we think its too cold here. I do welcome the stormy, cooler weather because we rarely get that in Las Vegas.

The good news is that I have a whole big bed all to myself. Its a far cry from my hospital bed. (I was just released from Camp Summerlin this morning.) I am enjoying a lovely down comforter and lots of fluffy pillows. I plan on sleeping right smack dab in the niddle of the bed. I also don’t have to share the bed with dogs and kids. I am not sure what to do with myself.  Hopwfully it should assure me a good night’s rest….I just hope I can get to sleep.

Four Seasons Bed

Here’s another first…each bathroom in our hotel rooms have a bidet (pronounced ba-day.) I believe bidets are typically found in a) very nice houses or b) in Europe or Latin America….or I guess nice hotels (as proven today.) This raises the question…how does a bidet actually work? I kept looking at it, trying to figure it out. It seems complicated. I almost feel like I should try it out just for s$@&’s and giggles. But for some reason, I think its designed more for men than women. I guess you learn something new every day… it was something fun to Google. If you’re interested, here’s how to use one. I hope you find the information handy one day. You never know when the information can become useful.

Bidet

Wish me luck tomorrow. I am excited to go. I am anxious to see what they have to say and dreading the bone marrow biopsy. I have been told by my friend (and walking partner Ilene) that MD Anderson is large, beautiful and somewhat overwhelming. I can’t wait to take some pictures and enjoy my time here. I will try and keep this updated throughout my stay. I am sure I’ll learn a lot!

 

 

 

THE FLU IS NO FUN

The flu needs to go jump off a cliff. It has hit our family twice now this flu season and my littlest one even got his flu shot. Good that did to any of us! To make a long, graphic story short (believe me you don’t want to hear the details – my husband will attest to that),  I ended back in the ER this past Saturday night. I had only gone home the Monday before. So, I got to spend a whole 6 glorious days at home. Coming back to the hospital was not in my planned near- future.

But, nonetheless, here I am…trying to make the best of it. And, me being a hospital pro at this point, I am still not sure how to make the best of it. There is still only so much tv you can watch, books you can read and games you can play without getting bored. I still sit here and worry about my kids, my family, my dogs…while even though I know they miss me, its more important that I get back to normal so I can stay home for good.

I am not sure when I am getting back out. My numbers keep fluctuating because of this bug that I picked up. I have been run through the ringer of tests (I really can’t imagine there are any left to put me through). They do it only to rule out any other possibilities.  Its hard to predict – like like everything else cancer-related. It has no timeline but its own. Glad I am slowly learning the art of patience and flexibility. (I think that’s my ending message in the majority of my posts…) Sorry for being “so original” but that must mean its an important thing to remember (especially for other and their families that are going through something similar.)

 

LOVE YOUR MELON

I got an AWESOME gift today. And in turn, a child with cancer being treated with chemotherapy also got an AWESOME gift today.

Love Your Melon

Check out my new pink hat that says “Love Your Melon”! Our nanny, Hailey, got it for me as a gift after her and I saw these hats on The Today Show a few weeks ago. “Love Your Melon” was created by 2 students at the University Of St. Thomas in Minnesota. The non-profit donates one hat to a child going through chemotherapy when a hat is purchased through their site www.LoveYourMelon.com.

Click here to link to the story that aired on The Today Show.

Immediately after the story aired on national TV, Love Your Melon hats were sold out! Hailey ordered mine just in the knick of time! I am so happy she was quick on the computer. More importantly, I am happy to know that there are lots of kids that are going through what I am going through and they are going to have big smiles on their face as well!  My hat is super soft, will go with everything I wear (because I wear tons of pink) and certainly keeps my head warm without being suffocating.

If you’re interested in helping out such a great cause, like “Love Your Melon” on Facebook  and check out their website. As I mentioned, they are currently sold out of all hats, but you can be put on their email waiting list and they will let you know when more hats are available. I think its just such an easy way to help out and bring smiles to these kids’ faces. Its so unfortunate that we live in a world where kids so young and innocent have to endure and fight cancer. They are so brave and the least we can do is brighten up their day.

On another note, a hospital update: I am still here in the hospital. Today is day 25. I am still completely dependant on what my platelet counts wants to do. I still fluctuate quite a bit, so that is what is keeping me in here. I am keeping my fingers crossed and a positive attitude. I know that rushing myself home isn’t going to do any good, so I am trying to be as chill as possible. My new hat will help make that possible! :o)

 

 

ANOTHER BLEED

If you’ve been following my journey, you know that I have leukemia. There are 7 different types of leukemia (M0-M6) and each type has their own characteristics. Some types are more favorable to have than other types. I happen to have a combination of 2 different types. I am a M2/M3. Particularly, in M3 type leukemia, patients can be prone to bleeds in the brain. I have mentioned in the past, that I have had bleeds in my brain (4 to be exact) and my last one was in the middle of December when I was admitted through the ER with a platelet count of 3. (Normal range of platelets is 15-0-300.) I tend to get bleeds when my platelet count is low. This is why my doctors keep me in the hospital after my chemo to watch my blood counts. They don’t want my platelets to get too low, so therefore, I do not bleed. Makes perfect sense!

Well, I have finished up chemo as of last Saturday and it really all went according to plan. Except for 4 evenings ago. My platelets were at 75 for that day – not extremely low, but the doctors did transfuse me with a unit of platelets. I was battling a viral/sinus infection so I had a sinus headache, stuffy and runny nose, congestion, coughing…you know all that typical head cold stuff that my kids and husband and everyone else in the hospital has too. Well, that evening, my headache just seemed to be getting worse and it wasn’t going away. My doctors ordered the obligatory CT scan just to be on the safe side. Low and behold, I had another bleed in my head, it wasn’t just a sinus headache. This bleed was only 8 mm long (in comparison to 10 cm bleeds that I have had in the past.)

I have felt like crap (that’s a very official medical term) for the past few days. I’ve been battling headaches, nausea and fevers along with still recovering from this cold. But I am on the mend! I was upgraded to the ICU (so I got to enjoy a transfer to another room here at Camp Summerlin.) Maybe my goal is to stay in every room in this darn hospital! Ha. The upgrade was necessary just so they could keep a closer eye on me and if the bleed worsened, they would be ready to handle it.

As of today though, they have repeated the CT scan, along with administering other tests (at CT Angiogram and an EEG – both are tests that test for brain funciton and see how the brain is working.) These tests have all come out with good results and I have no further damage. The bleed has not gotten any bigger. So that is GREAT news! It just makes me weary that I am pushing my luck with these bleeds. I obvioulsy would rather not have anymore. So, with 5 bleeds in total right now since the time I have been diagnosed, I do not show any major neurological side effects or damage from them. Everyone go knock on some wood for me that I don’t get any more and that it stays that way.

I’ll close with this (and seems to be my ongoing message)….Be happy and thankful for what you have. You never know when it can all change and it can all be taken away. These bleeds are eye-openers for me.

I also want to give a big thank you to all of you that read the blog and follow along. It means the world to me.

HAPPY VALENTINE’S DAY

It doesn’t matter if your attached, un-attached, single by choice, looking for love or already in a perfectly happy and content relationship. I don’t think there’s much of an excuse to not celebrate Valentine’s Day in one such form. In my daily tv watching today (of course every day time talk show was centered around hearts, flowers, chocolate and how to make this such a great memorable day), there seems to be a lot of pressure to “get it right.” I say screw that. If you don’t have a sweetie, remember there are lots of other people that you love that are in your life. I have sent and have recieved many messages today from good friends and family members. Its just a day to remind us to tell those around us that we love and appreciate them.  I’ve said it before, but it is easy to get wrapped up in our own chaotic daily lives that we forget to celebrate the ones around us. Imagine if they weren’t there. I am sure your world be dramatically different.

Small guesstures tend to make the world of difference and many things don’t have to cost a lot of money, or no money at all. I got fabulous Valentine’s Day cards from both my kids and you know for sure I’ll be holding onto those! They are taped up on my hospital wall. All I have to do is look up at them and it makes me smile. (A little bit of chocolate never hurts either.)

I checked back into Camp Summerlin on Tuesday morning and so I have about 1/2 week under my belt. I have finished my 3rd day of chemo and the chemo will go for 5 days. The plan is a stay of around 3 weeks again. Its easier coming into the hospital with at least knowing what to expect. This is my 3rd round of consolidation chemo and my doctors would like to see me complete 4 rounds. That’s what the crystal ball is telling me right now, so that’s all I have to go off of. Obviously my goal is to be cancer-free and the sooner I can get there the better!

On another note, The Villages in Florida, where my mom lives is having a great event this evening. Its too bad we are getting left out of the festivies but I am sure they will have a great time. Its a dinner and dancing charity event entitled “Its a Matter of the Heart” which is acting as a fundraiser to help raise awareness for leukemia and he need for blood and platelet donation. The Villages Sun doesn’t have the most update-to-date news website, so here’s the article regarding the event. I hope you can make the pictures of the article larger so you read it.

The Village Sun, Part 1

  The Village Sun, Part 1

 

The Village Sun, Part 2

The Village Sun, Part 2

Have a Happy Valentine’s Day and find someone today to at least tell them how important they are to your life. Just let them know you’re thinking about them!

Happy Valentine's Day

TIME TO GO HOME? MAYBE NOT YET…

Update…why does it matter when I tell you guys when I THINK I am going to get to go home? It doesn’t matter because its constantly changing. As I have mentioned in previous posts, cancer is a test of your patience. It doesn’t always follow your plan. The good news is that I have been done with my 2nd round of maintenance chemo for over a week. This is the point where my blood count numbers should be at their lowest and I should really feel like crap. And guess what?! I DON’T feel like crap. I’ve actually felt really good the whole time I have been here at Camp Summerlin. (I better not be jinxing myself here.) I have been recieving some platelet transfusions (which would to be expected) but other than that I feel like I am just taking up space here…kind of like my bulldog Gru just takes up space at home. (Bulldogs can’t help that they are lazy and just take up space.)

My Buddy Gru

My Buddy Gru

Sorry its not the best pic he’s taken, but he is quite photogenic and handsome (just like the character he is named after in Despicable Me.)

If you remember, my oncologist prepped me to be in here for 3-4 weeks from the start of chemo. She came in my lovely room yesterday and said maybe only 4 more days! (That would make my stay closer to 2 weeks.)

Kids Surprise Faces

The kids were just as surprised as I was when they heard the news. (I also think they could give Macaulay Culkin a run for his money with the Home Alone face.)

Then…my oncologist came in my room THIS morning and said everything is looking good, maybe I can go home in 4 days. (Notice it was the same as yesterday….she has ADDED a day.) She smirked when she said it too. We all know the game. It changes all of the time and so I really won’t know for sure when I am headed home until it actually happens. I am okay with it though. I’ve learned to not worry about it. It will happen when it is supposed to. Plus, I now have my whole home office all set up in my room here at Camp Summerlin.

Office Setup

Bank statements? Check. Laptop? Check. Printer? Check. External Hard Drive? Check. Reese’s Peanut Butter Cups? Heck yes check! I have everything all set up here now so I can actually get caught up and get some work done. At home there’s always distractions of kids, laundry, dishes…. Here at the hospital, I don’t worry about those things so its really a blessing in disguise that I can get all of these things done. Plus the nurses and doctors get a kick out of the fact that I’ve set this all up. Hey, I’m just trying to be efficient because when I do get home, I want to be able to enjoy those little kid faces and dog faces that I’ve been missing for the past 2 weeks.

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.

 

 

THE BONE MARROW BIOPSY

The plan was to have my bone marrow biopsy on Monday, Oct. 28. For unknown reasons, other than that hospitals are on their own time schedule, my biopsy got pushed to Tuesday morning, which turned into Tuesday afternoon…you get the picture. I finally was in the procedure room around 1 in the afternoon on Tuesday. It wasn’t my doctor doing the procedure and they gave me different medication than what I had received last time. Needless to say, I was a bit apprehensive. There is something to be said about intuition because it didn’t go as smoothly as I wished it had gone. Oh well! Remember that book I told you to read, Zen: The Art of Happiness? Yeah, I am sure you all went out to get it and you’ve already read the whole thing. Okay, I know that’s not the case, but it still should be on your “To-Read List”. One of its main points is how to find the positive things in crappy and even terrible situations. I’m sure it is something that each of us can benefit from in our lives. So…the bone marrow biopsy was not the lovely event that I thought it was going to be, but at least it is over with. And now we await the results. It probably won’t be until the end of the week or the beginning of next week to find out what our next step is in my treatment plan.

In unrelated leukemia news (other than the fact that I am hospital-ridden, so I actually have time for these things), I have been sucked in the world of Game of Thrones. Thank you once again Steve Jobs and Jackie. I have season 1 of GOT under my belt and will start season 2 when I know I can keep my eyes open. Its not that the show is boring, it’s the darn meds that I am on. Promise! I also started a new book today called Farm City: The Education of an Urban Farmer by Novella Carpenter. It’s a fiction book based on a woman who lives in Oakland, CA and makes her backyard (well abandoned land right next to her apartment) into a garden and mini-farm. I’m only a fourth of the way through the book, but its light reading, interesting and humorous. Its giving us all the message that its not that hard to grow vegetables and raise chickens for our own consumption. I guess Carpenter didn’t get the message that I’ve killed every houseplant I’ve ever had. Don’t get me wrong, I do think buying local and pesticide/hormone-free products if possible is the way to go. I just don’t foresee gardening or plucking turkeys in my near future.

Today was really a quiet day. I am still battling headaches. The spot in my lower back where the doctor hammered a big needle into it is quite sore. Imagine that. I plan on going on a walk before I settle in for a night of Modern Family…and whatever that new comedy is that’s on afterwards. (Not sure if it’s a good sign that I can’t remember the show’s name, but I find it somewhat entertaining.)

Be looking for tomorrow’s blog – my brother Braydon is organizing a benefit concert for all of you Chicago people! I will be giving you ALL of the info tomorrow! And just another thank you to everyone that follows the blog and to all the people who have given such awesome support. It means the world to me.