I’M BACK FROM MD ANDERSON

Okay…Well, I have been back for a week. THANK YOU to everyone that has texted, called or emailed me to find out what the doctors said. And I am sorry I haven’t gotten back to you. To be very honest, I have been tired and overwhelmed with no energy to get back to everyone. I guess that’s partly why I started this blog, to keep all of you who care, in the loop. (Well, also because there’s lots of times I can’t sleep or I get super bored in the hospital so it gives me something to do…I said I was being honest.) So here it goes….

It was a whirwind of a trip and all thank you to my GOOD friend Jackie and her husband Cary – some of the most kind, generous and caring people that have entered my life, let alone graced this Earth. I probably will never be able to thank them enough. We got all of my testing and doctor’s appointment all done last Monday. We thought we would need to stay until Wednesday but they wasted no time. My bone marrow biopsy was the last thing I had done Monday afternoon. It was NOT FUN and probably one of the worst I’ve had. I guess Jackie can attest to that because all I keep repeating on the car ride from MD Anderson to the Four Seasons (a 4-mile trip) was, “That was bad. That was bad.” But guess what? I survived.

Jackie was able to arrange for us to fly back home Monday night. So after a crazy cab ride to the airport (he didn’t know where he was going and was a terrible driver) and 3 rounds of throw-up (by me, not Jackie), we were able to board the plane and make the 4-hour flight home. We both slept the whole time.

The only downfall of us making such a short trip is that we weren’t able to explore MD Anderson more. I know we only saw about 1% of the whole place. And here’s the proof:

MD Anderson

 

The only damn picture that I have of the whole place.

I was planning on taking more on Tuesday… It reminded me of a small college campus – multiple buildings and just huge for a hospital. There’s a reason why people go there. It was extremely organized and efficient for such a large place. When I say “We” (I mean Jackie and I) planned on venturing out and doing some exploring on Tuesday….well okay and maybe enjoying the spa at the Four Seasons….but it all worked out just how it was supposed to!

So, you’re on the edge of your seat….”What did the doctor say?”

The doctor said…we’ve done everything right so far. My doctor here said their standard here is 3-4 rounds of consolidation (maintenance chemo.) I have completed 3 rounds. Almost every time I have chemo, I get a brain bleeed. That equals bad. I think if given her choice here, we would have stopped at 3 rounds of chemo. The doctor at MD Anderson highly suggests the 4th round of chemo; despite the risk of another brain bleed. The standard at MD Anderson is 6 rounds of chemo.

There are some tests that should have been done here in Las Vegas that weren’t done. Needless to say, they are being done now. MD Anderson also has the abilities to do extensive further testing because they are a teaching hospital. We should be getting the results of those tests soon. My brain bleeds? They don’t have a good answer – its my anatomy. There is no way to prevent them, except to keep my platelet counts up. We know that chemo is designed to wipe out my blood counts. Its a catch-22. So, that is why I stay in the hospital for at least a month at a time after chemo so they can monitor me: check my platelets daily (at least) and give me platelet transfusions if I need them (which is usually around 2 units of platelets a day.) It is very important that I get A- platelets (my blood type, irradiated and from a single donor.) These are all things that help prevent me from reacting to receiving the platelets. (Its just like getting a reaction when you put anything foreign into your body.) Its also why its so important to become a platelet donor if you can. Its very similar to giving blood. I can sometimes wait for up to 12 hours while they fly my platelets into Las Vegas from Arizona. Thankfully, Cary is A- and willing to donate his platelets to me. They will be a great backup and once again, another reason, for a big thank you.

So, in real terms, what does this mean? I thought I was done with chemo, but I’m not. I am headed into Camp Summerlin this coming Wednesday for another round of chemo. I plan on being there for over a month and I kind of get how the drill goes…it doesn’t mean that I don’t get anxious beforehand. Its not the most fun place to be when I could be home enjoying my daughter’s tennis lessons, my son’s t-ball games or just sitting on the couch and being able to pause and rewind my tv because I have Direct TV. (Let’s face it, sometimes it is just the small things that make us happy.) Its also funny because when I am home during the day, I really don’t watch that much tv.

Supposedly, after this 4th round of chemo, I should be done. Monthly blood tests should show that I am clear of leukemia. If it stays gone for 2 years, then “Peace Out, Leukemia.” If it comes back in that time period, I could be a candidate for a transplant. But we have time before we get to that point. Uncle Braydon better be living a clean lifestyle because the’s my first go-to to find a bone marrow transplant donor.

Well, that’s the basics of our trip and I am grateful that I got to go. We are certainly changing our original course of action and I can only hope that keeps me around a little bit longer!. I give my love and prayers to the Rowe family that live here in Las Vegas and lost their dad to AML just this past week. He left behind a wife and 4 beautiful daughters aged 10-16. I am also sending happy thoughts to Ilene (my walking partner) who had a bone marrow biopsy at MD Anderson today and gets her results tomorrow.

I am sure I will have much more to fill in on…and I’ll have more time on my hands come Wednesday. Stay strong and positive, and pray for these people that need uplighting in their hearts

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.

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.