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…

 

 

 

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

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.

THANK YOU NURSES AND GOOD TEST REPORT

Nurse Appreciation Photo

I just had to show Sam, one of my favorite day-time nurses, this picture. I mean thank you FaceBook, how could we be witty without you?! Sam did crack up and accepted my appreciation of her.

On a great note, I got some promising test results back last night. My FLT3 test came back negative! When a patient has AML, they take a blood test that is called FLT3 Test. A FLT3 mutation is a genetic mutation that may be screened during genetic testing, when diagnosed with AML. The FLT3 gene has demonstrated ability to predict a patient’s likelihood to benefit from therapy as well as their risk of experiencing a disease recurrence. This means regular chemo should give me a VERY good chance of going into remission and I have a much smaller chance of recurrence. This is FABULOUS news.

In more seductive news, the nursing staff has noticed that Buddy Braun and I have been taking more walks around the hospital floor. I hope Dave doesn’t get wind of our moonlighting! (Just kidding, most evenings Dave joins me on my night walk.) As bored as I get in this room each day, I’m still never alone.

Buddy Braun

WHAT THE HECK IS AML?

You’ve read my trials and tribulations of ths sudden prognosis and you’re probably still wondering exactly what is wrong with me. I was in the same boat. I was scared to look at the internet and the doctors are great but its hard to get a full handle on what is really going on in my body. Doctors just had such a sense of urgency to get my chemotherapy treatment and anitibiotics as soon as possible. It was a complete whirlwind.

This is is what I researched: AML stands for Acute Myeloid Leukemia. There are there 3 other types of leukemia and this happens to be the type that I have. According to The Mayo Clinic, AML is a cancer of the blood and the bone marrow. There is a rapid growth of abnormal white blood cells that accumulate within the blood marrow and interferes with the production of normal blood cells. Per the AML Alliance, AML is rare for patients under the age of 40, however it is the most common form of acute leukemia. There are more than 11,900 new cases of AML each year. Symptoms of AML include fatigue, shortness of breath, easy bruising and bleeding and increased risk of infection (all of which I had.) These are all symptoms that I contributed to have the flu or picking up something from the kids. And the bruising? Well I just figured it was from all the moving and upacking of boxes.

I have found many great leukemia support sites that give lots of good information and support and I am sure I will come across many more as do more and more research.

-AMLAlliance.com

-Bethematch.org

-DailyStrength.org

-Caring4Cancer.com

These are just a few that I have found great information from actual patients and survivors.

MOM’S VISIT & THE DIAGNOSIS 9.4.13

My mom decided to come visit and checkout my new house just after school started. It was when she realized that things just weren’t right. I spent the first 2 days that she was here with me on the couch throwing up, diarrhea, no energy or appetite. I almost passed out walking Ava to school and that is when my mom insisted that we go to Quick Care. They gave me a liter of fluids and sent me on my way – saying I was deydrated. It helped but not much.

The next morning my mom insisted we go to the hospital, I still wasn’t feeling much better. That was Wed, Sept 4. I haven’t left the hospital since then. I spent the next few days going through a badgery of tests. Anything you can think of: x-rays, CT scans, MRIs, continual blood draws. The blood draws confirmed that I had extremely low white blood cell count and low platelets. (For example, a normal adult should have at least a WBC count of 1000, mine was at 300.) I didn’t sleep for 2 days straight. The bone marrow test (test from HELL) is what confirmed it all – I have Leukemia.

WHAT? LEUKEMIA?  I’m only 31 years ago with and 6 and 3 year old.

I haven’t been home since that Wednesday. I will get on my high horse for one minute: be thankful for all that you have in your life, for your loved ones, make sure they know you care because you never know when there’s a day you won’t just be able to go home. I WILL survive – AML is completely treatable but your life can still just change in a heartbeat. Okay enough of that…

I have my husband and my mom living in my house to take care of the kids and keep the kids lives as normal as possible. I FaceTime with them every night and I miss loving squeezing their little bodies. They are hilarious in their bickering and their competitiveness about who has a better school. Some things just don’t change though. I still had to threaten to put Grady in time out (even though I am 2 miles away in a hospital bad. He shaped up!) In three weeks I will get to see them for a whole week. They have been making me pictures and masterpieces so I have a picture board in my room where they all get hung – even the neighbor kids have added to the Art Museum of Get Well Mommy.

Pic Wall