FLU SEASON IS OVER!

I have succesfully made it through my 4th round of maintenance. It has certainly not been a walk in the park. With each round of chemo, it feels tougher and tougher. I have been in the hospital a week now. I will plan on being in for at least another 3 weeks so they can monitor my blood counts and hopefully avoid any more brain bleeds. Its interesting how each round of chemo affects me differently. In my past rounds of chemo, I haven’t been too nauseated, however this round I certainly was. I have finally experienced the metallic food taste that many chemo patients complain about. All of my food has this weird metal taste that makes me not want to eat anything. I am experiencing headache issues like always. These are due to my previous brain bleeds. The blood that has not be reabsorbed back into my brain yet is left floating around in my head. It can be highly irritating and causes the lovely headaches I experience. They should go away, but it can take weeks for the bleeds to fully heal themselves. I always tend to hate writing posts like this because I feel like I am just sitting here complaining and its pretty much the same complaints and issues on a daily basis. But, everyone wants to know how I am doing, so there it is! I’ve also picked up some sort of cold. It always seems to happen when I come into the hospital. It just proves what most nurses will tell you – the hospital has WAY MORE germs than your own house. Its not exactly the cleanest place in the world.

The good thing about this time around is that flu season is over! Why the excitement you must be wondering? During flu season, children under the age of 16 (obviously this includes my little ones) cannot come up to the patient rooms to visit. So, for my previous two rounds of hospital stays, I would have to go down to the lobby and visit with the kids down there. It wasn’t exactly convenient or condusive to having a nice visit with the kids. They had to stay behaved (haha) in the lobby, be quiet, etc. and it just didn’t make our visits that much fun. They would get bored quickly.

Now that flu season is over, they can just come and visit me in my room again. Ava and Grady think this is the greatest thing in the world! We hang out, they can watch tv, they can lay in bed with me and just be kids visiting their mom in the hospital. It truly has lifted their spirits and it has made this first week much more endurable for me as well.

Ava in Love Your Melon

Ava donning my Love Your Melon Hat. They have a new spring line of hats coming soon and totes! I can’t wait to check them out!

Grady in a Box

What do you need toys for? Give a 4-year-old a box and he will be entertained for hours!

Mom & KIds with Blanket

The kids love to cuddle in bed with me. They think hospital beds are one of the coolest things invented. “Why can’t we have this kind of bed at home?” Well, let me tell you why…

 

 

 

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.)

 

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.

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.

FEVERS + A CANCER PATIENT = THE ER

If you “Like” my Facebook page or you are my Facebook friend, then you’ll already know I am back in the hospital. My last post was on Saturday and it was titled “I’m Exhausted”. Well, no crap I was exhausted – I couldn’t even spell anything correctly – much less keep my eyes open. The chemo was doing its job and it was making my body crash. I was doing too much at home anyway with all the Christmas and birthday errands. As a cancer/chemo patient (or at least for me), I know in my head that I need to take it easy. However, when you have those periods of time when you do feel good, you just want to do as much as you can because you do feel good! So, I was out-doing myself and my chemo was doing its job.

I fell asleep on the couch Sunday afternoon sitting up and apparently I was trying to pretend I wasn’t sleeping but chose to stay on the couch and not go up to bed. I slept straight through until about 4 am Monday morning.

Me Sleeping Sitting Up

I woke up freezing cold (Yes, it does get cold here in Vegas. My mom will even back that up because she lives in Florida and its still in the 70′s-80′s there right now.) But, my coldness was most likely due to my fever and body aches. I had been working on getting an office visit with my oncologist since I had been discharged from the hospital. I needed blood work done to see where my blood counts were headed. That hadn’t been quite so successful (a story for another time, but one of the reasons I am now working on getting a second opinion hopefully at UCLA.) By mid-morning, I took my temperature and it read 102.8, then 101.8. I was pretty sure I needed to head to the ER. I called my oncologist’s office and the nurse immediately agreed that I just needed to go to the ER.

The ER (at any hospital) is never a fun place to go. It is usually the starting point for going into the hospital for anything you might have. So, while ER nurses have a very broad-based knowledge (because I am sure they have seen just about everything), they don’t have the more specific knowledge that a cancer patient and a cancer nurse/doctor might have. So, that can be frustrating. I just wanted to get up to my 4th floor, to the nurses I knew, and get the ball rolling in making me feel better. Because of the smaller oncology/chemo beds they have here they didn’t have a 4th Floor bed available right away. I was in an ER isolation room from 11:30 am on Monday morning until they transferred me up to my 4th floor at 3 am on Tuesday. Ironically, Summerlin Hospital has been working on a larger wing for oncology and chemo beds and I was the FIRST one in it on Tuesday! I got to pick which room I wanted, so I really moved rooms twice on Tuesday.

One of my favorite nurses, Melody and I on the new oncology wing.

One of my favorite nurses, Melody and I on the new oncology wing.

When I arrived in the ER, my blood counts were all incredibly low, I don’t know how I was even functioning. To be honest I really didn’t feel that bad. I just know that fevers are bad news with cancer patients. They have been treating me for fevers and infection and giving me lots of red blood cell and platelet transfusions. My son’s 4th birthday is on Monday, so I REALLY hope to be home by Monday. If not then, then Christmas Eve will do as well. Actually I know I have to stay in here as long as I have to but I pretend sometimes that I am in charge of my own body. I’m obviously not because it hasn’t been doing what I’ve been telling it to do! Ha Ha Ha

Its all a big, long, arduous, painful learning process. And when you have a bump in the road (even though you have a good idea its going to be there anyway), its still tough mentally and physically to endure it all. I want my treatments to be effective and efficient (I know you’re saying, “In your dreams Amanda”) so I can just get this done with and my kids won’t have to remember all the times I couldn’t be there because I was stuck in the hospital. I feel like the younger they are, the less they will remember. I will talk to them about it when they are older and they can understand but right now I just want them to be kids! And they grow up so fast! Any parent can tell you they grow up too fast. So, if you have kids, go give them an extra hug and kiss tonight or this morining (whenever you are reading this.) Depending on their age, they may look at you funny but who cares. They are always going to get lots of hugs and kisses from me whether they like it or not! We do hugs and kisses on FaceTime every night.

“I’LL BE HOME FOR CHRISTMAS…”

Well, my hospital room WAS full of Christmas cheer (no, I’m not going to get all “politcally correct” on you and call it Holiday cheer) but its time to take the decorations down!

My in-laws, Mike and Lynn were here earlier to help me pack it all up because I am headed HOME from Camp Summerlin to enjoy Christmas with my husband, kiddos and bulldogs (and a Mastiff)! It’ll be nice. I still have shopping to do, cookies to bake, etc. but it will feel great to get back into the routine of things. There are ALWAYS things that need to be done before Christmas – just like every other normal person. And if you are one of those “abnormal” people who have EVERYTHING done and its only the middle of December, then I really don’t want to talk to you! hahaha

In my defense, before I got admitted back in the hospital on Dec, 2, my awesome husband was great about getting all of the outdoor lights up (including the white reindeer lit up with white lights, the blow-up M & M and the light up Snoopy . He also got the Christmas tree up inside (yes, we use a fake tree every year) and the whole family helped decorate with the lights and ornaments. The stockings are hung over the fireplace. (I’ll grace you with all of these pics when I get home later today.)

I love this time of year because it just feels warm and cozy to me. I love the smell of Christmas, the festive Christmas lights and the corny Christmas music that seems to run on a neverending loop wheverever you are. Once we started having a family of our own, Dave and I worked really hard to try and keep certain traditions alive that we do every year at our house. We have implementent the ever-so-popular Elf on the Shelf. (Roger is the name of our Elf – and he’s quite devlish and creative at my house.) We go and visit Opportunity Villages’ The Magical Forest  and spend an arm and a leg there (its not cheap!) (This year they asked for my first born child as well, and that’s where I had to draw the line.)  At  least we know the money goes towards a great cause here in our town. And last, but not least, we go to Town Square so that Ava and Grady we can visit Santa and Mrs. Claus and tell them all of the things they would like for Christmas. The setup at Town Square is great because it is designed as a Normal Rockwell Christmas.  You actually go inside Santa’s little house. We’ve always gotten good pictures from them and some classic ones as well! (Such as Grady laying across my lap screaming because he wants to have nothing to do with Santa.)

My numbers (meaning my White Blood Cells, Red Blood Cells and Platelets) are all looking up and I’m feeling pretty darn good. I haven’t gotten full discharge directions yet, but I believe I will be visiting my oncologist’s office a few times a week for them to draw blood, monitor my blood counts, decide if I need transfusions of red blood cells or platelets and to schedule my next round of chemo which I imagine will be in the beginning of January sometime.

I am just happy and content to continue these traditions –  Leukemia hasn’t gotten in the way this time around!

As Johnny Mathis says, “I’ll be home for Christmas…”

P.S. WordPress has decided it doesn’t want to be fully functional today so I can’t upload any pictures into my post. As soon as the bugs get worked out, I will post pictures.

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.

The Robe

Today is one week since I finished round 2 of chemo. According to my oncologist (and from my experience the first time around) this is about the time side effects start setting in because my numbers are starting to drop more and more. When your blood count numbers are low, that means your immune system is compromised, so you are more susceptible to side effects. For example, this afternoon my extremities (hands, feet, head and nose) got really cold and they just wouldn’t warm up. I bundled up in my awesome neon pink Target robe (thank you Michelle!) and turned up the heat in my room. I wear my robe on my walks and you wouldn’t believe all the compliments I get.

Pink Robe

I got confirmation today that I will be in the hospital (except for a few two-day visits at home) for at least the next 4-6 months. This is basically regardless of what kind of treatment plan my oncologist thinks is best. My two options will be either a bone marrow transplant or I go into remission (which then means I have to do “maintenance chemo”.) We (meaning me, Dave and my mom) all knew that fighting leukemia wasn’t a sprint but a marathon. But, by having Dr. Wareman say the words out loud, she really gave it some substance. Its really making me think. I wasn’t upset by the news. It was just more of an eye opener.

I feel like I have been bored and somewhat mindless the past few days. I know my main goal is to get better in here but it really tests your patience when you are confined to a place and you can’t do as you please. I spend my days pretty much mindless things – reading books, watching tv, playing Candy Crush, doing word finds and going for walks. Of course I work on my blog as well. This blog is an outlet for me and it gives me a purpose. Thank goodness for my mom who comes and is with me the majority of each day and Dave who comes every night after work. But knowing that I am going to have an extended period of time in here, I really feel the need to have something to do that has a purpose or goal.  So if anyone has any brilliant online business ideas that I can do while sitting in my hospital bed, please share!