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.

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!

FINISHED WITH 2ND ROUND

I finished my second round of chemo Friday night around midnight. I was glad to have that over – not that I got sick or was uncomfortable but its more of a mental accomplishment. I am one step closer to getting treatment over and there is something about being CONSTANTLY hooked up to a machine. During chemo, I was only unhooked for about 10 minutes a day so that I could shower. I would get clean and change my clothes and then Mr. Buddy Braun was my pal once again.

Everyone keeps asking, “What is the plan?” Good question. This is what I know so far – and remember things can always change. My oncologist, Dr. Wareman, will do another bone marrow biopsy in about 2 weeks from now. The biopsy entails her literally hammering into my back above my right or left hip to get samples of my bone marrow. All I have to say is THANK GOD for morphine. She will get the results back from the biopsy 3-4 days after that. If there are no blasts (leukemia cells) then I believe I just go onto maintenance chemo and may have an opportunity to go home at some point. (I’m not sure how that all works.) If there are blasts left, then we consider a bone marrow transplant. Transplants are actually pretty common and sometimes the preferred treatment option for leukemia patients. They would clear out ALL of my bone marrow through a super-charged type of chemo then give me new bone marrow from a donor. Its kind of like wiping the slate clean and starting all over. So, for now, I’m just dealing with lovely little side effects that come with having chemo and waiting to find out how my body responds to this latest round of chemo.

Speaking of bone marrow transplants…when you get a transplant, you obviously need a donor. The best chance of finding a match is if you have a sibling. Lucky for me I do! My brother, Braydon, who is 4 years younger than me, agreed to donate his marrow if we are a match. (He better have said yes or I would have kicked his you-know-what like I did when we were little. We played a lot of WWF Wrestling.) Testing for a match and the actual donation process is basically painless. I think back in the day it was a lot more involved, so we are lucky to have made such strides in medical treatments and technology. Braydon got to hear all of this information straight from my oncologist because he came from Chicago this past weekend to visit. I was glad he got to meet Dr. Wareman firsthand and hear how the procedure would go if he is indeed a match.

Uncle Braydon & Grady

Uncle Braydon & Grady

The visit with Braydon was great. He and I stay in touch through talking and texting but I hadn’t actually seen Braydon in about a year and a half. He came up to the hospital for the majority of the three days he was here. He got to enjoy the super comfy hospital lounge chair. (I go all out for my visitors!) We just chatted, went for walks and enjoyed multiple episodes of mindless tv, such as American Restoration on the History Channel. (Its actually an interesting show. It is set in Las Vegas and is a spin-off of Pawn Stars. We learned a lot about old Harleys, Coca-Cola machines and trains.)

Just a quick reminder, t-shirts are now available for order again. Many people missed the ordering deadline the first time around and wanted to know if they could still get shirts. Well, here is your opportunity! You have until November 11th to order and they will be delivered straight to you by Thanksgiving. Thank you in advance for all of your support.

Kiddos supporting their momma!

Kiddos supporting their momma!

Click here to order your t-shirt!

HOSPITAL SITCOM

I will first give you an update, then get into the funny stuff. I am still on my second round of chemo (to catch up those of you who aren’t up-to-date) and I am on Day 6. That means I have one more bag of the poison and that will be in my body by tomorrow around midnight. Then I will have about a week (hopefully) of no major side effects, and then after that, that’s when the fun begins. Side effects can include fevers, chills, night sweats, hemmoroids, rashes, weakness, loss of appetite and stomach issues. That’s only skimming the surface. The first time around, I was lucky enough to avoid the nausea, mouth full of canker sores, metallic taste in my mouth and the fairly long list of other possible side effects. Believe me: I AM GRATEFUL. My blood counts are high and my doctors are happy. All is well in Camp Summerlin for today.

So now we address the possibility of me creating a sitcom. (Now I am very new to this blogging stuff so you can see I am very balls-to-the-wall in this whole new career I am creating for myself. What else do I have to do while sitting here in the hospital bed? I might as well dream big!) Anyway, the premise for the sitcom: Its about all the abnormal $hit that happens around Camp Summerlin but seems all VERY normal for us that are here day in and day out. The idea came from my dear friend Malene who is Danish. She said us Americans may not find it hysterical but it would be a hit in Denmark. (They have a different kind of sense of humor than we do.) So…now I am thinking…I might need to find a Danish producer and production company. Ahh…just minor details.

Denmark_flag

So I have just a few examples of what would be included in the pilot episode. (All events actually took place.)

Incident #1: I told you $hit went on in here – literally. I pride myself on my multiple walks that I take daily. Even though my walking buddies left me, I have kept up the trekking. Its so important to keep moving and stay active whether you have a disease or are completely healthy. (Blah, blah, we all know that, right?) I am one of the youngest on my floor so there are patients that are much older and in worse condition than me. I am self-sufficient but others can’t get to the bathroom on their own and have to wear Depends. (This is going to bite me in the a$$ because one day I am going to be the one in the Depends.) Anyway, I was taking my nightly walk and I just could not get away from THE SMELL. Someone had just done a Number Two and there was no escaping it. I even had my mask on and I was still being inundated from the odor. Needless to say, I cut my walk short. But, like I said, normal occurance in a day at Camp Summerlin. I hope one of the nurses grabbed the air freshener and sprayed the crap out of the hallway.

Incident #2: My floor is split between chemo/oncology patients and the cardiac unit. Cardiac patients come here to recover from open heart surgery, removed lungs, etc. The cardiac patients do not have private bathrooms. They just have a toilet in their room and a curtain to give them privacy when they do their business. There are no doors because back in the day heart patients would go in the bathroom, lock the door and then pass out or have a heart attack and the nurses couldn’t get in. Therefore, the policy was changed. For some reason, the toilets are positioned toward the front of the room and there’s a window with blinds right there as well. You know where I’m going with this. As I take my walks, I have more than once walked past a room with the privacy curtain closed and the blinds WIDE open. Only for me to happen to see an old gray-haired man taking a pee. A normal occurance in a day at Camp Summerlin.

Incident #3: Same scenario – I’m taking a walk. (13 laps around both nurses’ stations is a mile by the way.) I happen to look into an open door to a patient’s room. (I feel like a peeker but I can’t help it. If you don’t want people to look in your room, then close your door!) Anyway, there was another elderly gray-haired man standing with his back to me. The back of his hospital gown was just WIDE open. Can we say a FULL moon? Believe me, I kept walking – and quickly.

Full Moon

Incident #4: I was getting my mask on to go for a walk. (Maybe these darn walks are the cause of my problems. If I just became a hermit and stayed in my room all the time, I wouldn’t have to endure these episodes. Ehh…that’s too boring.) My mask was on and I hd my trusty pump (Mr. Buddy Braun) with me. I encountered an older lady in her 70’s with her super comfy hospital lounge chair in the middle of the hallway (not really normal.) She does have a nurse with her (a good sign) and they are trying to get her out of her chair to take a stroll. Apparently, she has Alzheimer’s so she doesn’t really know where she is, what’s she’s doing here and she’s not sure she wants to walk. The nurses were encouraging her and all seemed to be well. Then she started yelling, “Let go of me! Let go of me!” and “Help! Help!” Then other distressed noises come out of her mouth. Then she calmed down and continued walking. Then she decided she wants to go into another patient’s room, so they needed back up nurse support to get her going the right way again. Then she doesn’t want to walk again and threatened to hit the nurses with her cane. More than once! That’s when I decided to get back to the safety of my own room. The halls were too dangerous for me! All I knew is that my end wasn’t going to be due to an old lady with Alzheimer’s and a cane.

That was all just a sneak peak. I will periodically update you on new incidents because I am SURE I have not experienced the last of them. I only have more to look forward to – and more sitcom material. Malene! Start scouting out a production team in Denmark! Stat!

INEVITABLE CHANGE

I’m starting off on a random note. I just saw on the news (because I have so many tv options at 6 pm on a Friday night) that it is National Taco Day and National Vodka Day. Go out and celebrate! I just know that would give me a stomachache.

Its been an interesting day. It started with my oncologist Dr. Wareman (who is awesome and super smart by the way) said I could go outside for a bit! Do you understand what that means to someone who has been inside a hospital for a month? I was excited. Of course, today was the coolest day of the year so far at 70 degrees. I sucked it up and still took advantage of my opportunity to breathe fresh air. Remind you I live in Las Vegas, so we’ve been in the 80’s and 90’s until today. The air and the sun was absolutely perfect.

I’ve made a couple of dear friends that also have AML. They are further along in the treatment process so they have shown me the ropes around here. They are also my walking buddies. We have our walking route around the nurses station and we chat, share stories, complain about side effects and meds and of course gossip. Believe me, there can be as much drama and gossip with the nurses and patients as there is in high school. Well come on! What else do we have to do?? We are called the “walking pack” by many of the nurses and doctors. I like to think of us as the Walking Warriors because you really need a shaved head to join the group.

The Walking Warriors Me, Ilene, & Annette

The Walking Warriors
Me, Ilene, & Annette

Back to the point of inevitable change. One of our Walking Warriors, Ilene, left us today to go to MD Anderson which is in Texas. It is the largest practice of leukemia experts in the world. I was so happy for her to have the chance to go and she was thrilled to be given the opportunity. The bittersweet is that we have all become such good friends and such great support for each other. It was hard to see her go. However, it represents how we are all in transition and sometimes things must make a change for better things to come along.

Treatments and medications are constantly changing. You have to take each day step-by-step. I started my second round of chemo today. Yesterday and today my blood count numbers were great. But, we know with the chemo my body will go through more changes and my numbers will drop. That is to be expected because we are basically trying to change what my body was doing that made me sick.

I know one thing. The only thing that shouldn’t change whether you are in a hospital, going through something at home or work or have the perfect life: Your Positive Attitude. That will ALWAYS get you through ANYTHING.

And this is my positive attitude picture about AML.

And this is my positive attitude picture about AML.

NOT EVERY DAY IS ROSY & DONATE PLATELETS

JUST heard on the news that tonight is a full moon. I guess that explains a lot. You’re probably thinking that I was crazy thinking that everyday was just going to be a piece a cake and full of humor and funny things that happen here at the hospital. Not so. I had a breakdown last night. I can’t pinpoint what caused it. I finally finished my first round of chemo so I should happy but I just felt trapped, sad and helpless. I know I am supposed to just sit here or lay here and rest and get better but that is easier said than done. Especially when you know you have all of these people around you doing everything else for you that you are used to doing yourself.

I woke up this morning to my finished chemo round, yay! But it really kicked me in the butt. I had a fever and almost passed out in the shower. Toss that modesty out the window! You don’t care who sees what when there is just black in front of your eyes. I finally came out of it but that certainly wiped me out for the majority of the morning. I slept more than I have slept in quite awhile here. The reasoning is that the effects of chemotherapy is cumulative, so now that I finally reached my last and final day, it really did me in.

I have felt better as the day has gone on. My fever did go away, which is good because fever can indicate an infection and that is the LAST thing that I need. That’s why everyone gets to wear the super cool gloves and mask when they come in my room.

You remember Dave's cool outfit

You remember Dave’s cool outfit

The best thing of the day so far so that I am not hooked up to Buddy Braun today! My chemo is done and I am still waiting for my platelets to come from the Red Cross so there is no reason for me to be hooked up! I feel free! I went for 2 lap walk around the hospital just because I didn’t have to push him! I feel like I’m cheating on him. Ha.

On the note of platelets…We always think about donating blood but rarely do you hear of people donating platelets. It doesn’t hurt and (from what I’ve been told) it only takes a bit longer than donating blood. There is a special type of platelets that I need and I have been waiting since 8 am this morning. Guess what?  They still aren’t available and its 4:45 pm. So if you have the time, consider donating platelets. There are countless people that can benefit from your donation.

HOSPITAL ETIQUETTE

Being in a hospital is just weird, most men usually aren’t even in here (they don’t go to the doctor! They never get sick!) and women come here to have babies. (At least that’s all I associate hospitals with.) You do lose all sense of modesty and the nurses are used to it. It seems more awkward if you seem weird so I feel like its just easier to go with the flow. I got my first full on sponge bath (sorry Sponge Bob Square Pants – it didn’t involve you.) And I was suddenly placed on bed rest. Guess what that means – BED PAN!! Because there was bleeding on my brain, doctors wanted to me reduce how much I was moving around.

Now the bed pan. I always got the general concept of it, but it is literally a pan you lay under your butt and you pee in it, in your bed, with the nurse right there. Am I worried…am I getting in the pan? Am I peeing all over my bed? I mean this could get embarrassing. I’ll just say I became a pro at it but was also proud when I got to graduate to the “big girl potty”.

The Bed Pan

The Bed Pan

Now that my only job is to take medicine and follow doctors and nurses orders (who have all been fabulous by the way) my big tasks for today are: to get an actual REAL shower and a take “big” walk around the nurses area. Now, from going to being a personal trainer to making a walk “around the nurse block” seems silly but that is how broken down my body has become. I better get my sweatband and water bottle to make sure I can get back to my room. On a side note, on my walk, I found an American Cancer Society magazine that features all of the cool hats, scarves and wigs that I can don once my hair falls out. Ironically that part isn’t freaking me out yet.

Because I am on continual chemo, antibiotics, plateletes or red blood cells, I am hooked up to a pump that attaches through a port-a-cath in my right chest. So “Mr. Buddy Braun” goes with me EVERYWHERE. He stands 6-ft. tall and is like my protector. Except it can get daunting taking him with me to the bathroom, walks, or even to get something on the other side of the room.

Buddy Braun

At least the hospital staff knows I’m not escaping here any time fast – Buddy Braun would be the weak link.

The last thing you need to know if you are going to come visit me. You’ll get to look like a dork. Because my immune system is so low, you don’t want to get me sick. All visitors get to wear masks and gloves and sometimes even gowns. Dave got away without a gown last night but he needs bigger gloves.

Visitor's Wear

So as you can see, this is certainly a learning curve – having AML, living in a hospital, creating a new blog, so I am embarking on a journey of many new experiences. I would appreciate all of your support and advice and any comments you make on my blog help me out as well. As I said, I’m a newbie to blogging and WordPress, so if there are any experts out there, I would love to pick your brain. THANK YOU FOR READING!

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