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