THE HAIRCUT

I’m going to stop apologizing for disappearing for a few days at a time. Its just going to happen. Recieving 7 days chemo was not a big deal. I actually felt fine. Its when you are done with the chemo is when all the side effects start happening. I have been down and out and in a ton of pain for the past fews days because my small intestines got inflamed (aka gas pains.) I told you I’m not modest about anything anymore. I’ve had pains that have me doubled-over in agony and I can’t even move. For comparson, the pain was similar to little contractions when you’re having a baby. This is the first time I’ve picked up my computer and could even think about typing.

Other than gas pains, I have something much more exciting to share. I shaved my head tonight! I was excited to have it done. My hair was falling out like crazy – all over my sheets and pillows and it was driving me nuts. Dave brought his clippers and he went to town. I consider myself somewhat girly, and I’ve had really long hair for quite a few years. It would lead you to believe that shaving my head would really be an issue for me and I surprised even myself. I thought that maybe in the moment I would shed a few tears but there were none. It actually gave me a feeling of empowerment. Its one thing that I have control over.

Before Picture

Before Picture

Here’s what I looked like pre-haircut, compliments of Dave.

After Picture

After Picture

And here’s the aftermath! I think Dave has found a new calling!

 

I GOT TO SEE MY KIDS TODAY!!!

Yes, you heard me right, the my kiddos got to come visit me at the hospital this evening. I found out the other day that one of my new walking friends was able to have her 8 year-old daughter come visit. It was the first time she had seen her in a month. It made me start thinking, Ava is 6 (going on 16), she’s not sick, she should be able to come visit.

The charge nurse was in my room today and she was looking at the wall of pictures and proceeded to ask about my kids. We started talking and I casually asked what the age cut off was for visiting and wondered if maybe my daughter could come to visit. She said sure, she had no problem with it. She just wanted me to clear it with my chemo nurse or one of my doctors. Well I after that, I was on a mission!

Dr. Alexi (my infectious disease doctor) was the last to come check on me today so I asked him. He is the nicest, funniest man with a Detroit-Latino accent who has 4 kids of his own. I figured he was my best shot, so I asked him. He said he had no problem with it as long as hands were sanitized and masks were on. (We already know about that protocol.) I also checked with my chemo nurse and she said as long as Ava was coming, Grady (who is 3 1/2) might as well come too as long as he would keep his mask on. If one had been exposed to something, they both would be sharing it anyway because they are home together. (Makes sense.)

I immediately texted Dave and my mom to let them know the great news. We made a plan in case Grady was going to be difficult about the mask. (You can never know what a 3 year-old is going to do.) So, the whole family came: Dave, Ave, Grady and my mom.

It was so fabulous to see them. They weren’t scared. They thought it was cool that they got to wear masks. We even sent the masks home with the kids so they could pretend they were doctors.

Grady in his mask

Grady in his mask

Ava gave me 6 individually construction paper wrapped presents adorned with pipe cleaners. What was inside each one? Rocks – oh wait, excuse me- they were crystals from the backyard. (She did take time to find rocks that had sparkly parts to them.)

Ava's Presents

Ava’s Presents

They stayed for about an hour and they were so well behaved. I think it gave them a sense of comfort to see me in person and to see where I was. I can’t explain what a great mood it has put me in that I was given this opportunity. I even got to squeeze them both with big hugs and that just made my day! The next time I see them is probably when I am released to go home for a week – which we still don’t know exactly when that will be.

Once again, take time to let people know how much you care and how special they are to you because you never know what is going to happen.

Kids Visit 9

 

 

OVERWHELMING SUPPORT

I am truly overwhelmed by the amount of support and people reaching out since they have found out about my recent leukemia diagnosis. And by overwhelmed, I mean OVERWHELMED. I make it a point to respond to each FaceBook comment or post, each email, each text, each tweet and each comment on this blog. I want everyone to know just how much it means to me.  I have had such encouraging messages from long lost high school friends (and their parents), college sorority sisters (go AGD!), old bosses and the list goes on.

It has also renewed my faith in humanity. As we have jobs, households to care for, kids to raise, more stress and responsibility, it is very easy to focus on all of our own “problems” and put blinders on to the rest of the world. I will admit I am guilty of this. I had a very stressful past year. It was all I could do to focus on just my own crap.

I am very moved by people’s generosity. My friend (who was my attached-to-the-hip best friend in middle school) set up a donation site for me (selfless plugs are coming…). She has raised over $10,000 from this site that will help with the cost of medical expenses and treatments that I will need for at least 6 months (hopefully its not longer than that!) Click here to check it out.

My husband has set up a t-shirt fundraiser so you can all have t-shirts that help show your support of me getting better. (I thought it was an adorable idea. He designed the t-shirts and didn’t even tell me until the site went up and they were ready for purchase. There has been such a great response to them-makes me feel all warm inside.

T-shirt Fundraiser

Here’s the logo for the orange t-shirts. Click here to purchase a t-shirt of your own.

Even my neighbor’s son (a great soccer player) wanted to give me support on the soccer field. He asked his mom to buy orange laces to go in his cleats for the soccer season. How sweet! When I get out of this place, I will need to go support him at some of his soccer games. Its the least I can do.

Cole's Soccer Laces

I’ve learned a lot about myself  being more kind and thoughtful to others in a fast 3 weeks. It has humbled me and put my faith back in humanity and made me realize there really ARE good people out there.

CORRECTION

So I was doing some personal journaling and note-keeping this morning and I just realized, I lost a week of my life. I actually came to Summerlin ER on September 4th which is  a whole week before I started blogging and telling you all when I got into the hospital. That means today is Day 19 that I’ve been in the hospital.  Guess that shows how out of it I was at some point. At least I got it all straight now! (And I hope I’m not going crazy.)

MY NEW NORMS

I know it’s been a few days since I have posted. Even my computer seems mad at me. It took awhile for it start working correctly. I’ll be honest. I just didn’t feel like being on the computer. I’ve been watching a lot of Food Network, the news and football and reading. Thankfully I have cable in my room. Its no Direct TV (which I miss dearly), but I’m not going to complain.

Today is Day 10 of being in hospital and I am certainly learning the ropes around here.  I’ve been paying more attention to all the medications they are giving me and what they are for. Its empowering to know what is going on. But after 10 days, I have started to realize that I have a whole new set of norms that are settling down for me.  There was such a big adjustment from only 10 days ago when I was at my own house, doing laundry, making meals, cleaning, (still unpacking), taking the kids to and from school to BAM! I’m at the hospital and I’m not leaving for a month.

My days are now filled with: (in no particular order)

-finding out who my nurse will be for the day (and/or night)

-getting my morning blood count and platelet numbers

-getting platelet and blood transfusions

-taking tiny cat naps but not being able to sleep at night

-having blood taken from me (thankfully I have a port-a-cath so they can now just take the blood from that instead of getting poked in the arm constantly. I’m still bruised up from blood draws and IVs.

Bruised Hand

-watching terrible daytime tv (I do make sure I try to catch Ellen. Most times I end up having the news or Judge Judy on in the background. It could make you go crazy.)

-FaceTiming with my kids (we usually Facetime after school and before they go to bed. Thank you Steve Jobs for this wonderful technology because without it, it would make things infinitely more difficult.)

-getting visits from my mom during the day and from Dave in the evenings after he is done working

-been doing a lot of reading (I’ve always been a big reader.)

-doing a lot of walking (I met a new friend who stopped by my room today who also has AML. She has been in here longer than me. She’s already shaved her head. I can’t wait to go walking with her tomorrow so I can get her insight and experiences.

-staying on top of my medications that help with a rash I’ve developed all over my stomach and sides, crazy gas pains and my constant headaches (all of these things are normal but they are still annoying). I told you once you’re in the hospital like this, you have no filter. I don’t have issues with sharing all these darn side effects. Watch out! As this goes along I could get more graphic!

-fighting fevers (I get extremely cold and shiver but my temperature will be 102 degrees. It usually breaks about an hour later where I break out into a huge sweat. This happens at least a couple times a day.)

-and then there’s the hospital food… I have much to say on this subject:

Most people are in the hospital for a day or two, maybe 3…I’ve been in here for 10 days and they expect me to be in here for at least 2-3 more weeks. Then I get to go home for a week. The reason I bring this up is because I am subject to all the hospital food on a daily basis. People make jokes about how bad hospital food is (kind of like airplane food back when they served meals in the olden days.) Well the jokes aren’t really jokes – the food is NOT good. I’ve watched enough Food Network, Master Chef, Chopped and Barefoot Contessa to make me an expert.

I have to admit breakfast is typically the best meal of the day. It is usually French toast with peaches and yogurt or some type of cereal (Cheerios, Rice Krispies) with yogurt and new obessesion canned peaches and pears and sometimes a hard-boiled egg. But really, how hard is it to mess up breakfast? Because of my low white blood cell count I can’t eat any fresh fruit or vegetables. I’m really missing them. This is called being neutropenic. Fresh fruit and veggies just have too high of a risk of bacteria being on them, even if they are washed properly.

Lunch and dinner are another story. I simply cannot eat any of their meat “products”. I can’t even be convinced that its meat. They aren’t edible. Typical lunches and dinners are roast turkey, pot roast, baked or honey Dijon chicken. I can’t even stomach them.

Turkey Dinner

They don’t do bad with their pastas though – I can eat the lasagna and stuffed shells. I’m not saying it’s a 5-star Italian restaurant but I am able to eat it. Their sides aren’t so bad – typically it is mashed potatoes, sweet mashed potatoes or a broccoli and cauliflower medley. If you noticed, there is not a lot of variety. Thankfully my house is only 1 mile from the hospital and my mom likes to cook so most nights I get home cooked meals. I am very grateful for that. Or Dave picks me up pot roast from IHOP. Don’t laugh but I love pot roast and IHOP has the best in town, hands down.  I feel so lucky that we have one within a mile of our house.

So moral of the story, be grateful and happy for the life you have now because it can change drastically in an INSTANT.  And to be clear, I am grateful and happy that I am here. I’m still alive. That’s why I titled this “MY NEW NORMS”. I’m not complaining about things, its just I have a different kind of life right now.

PLATELETS HAVE FINALLY ARRIVED

Just a quick update! My platelets finally arrived. It is now 9:30 pm. I mentioned earlier today that I was supposed to get them this morning. Because I need a certain type of platelet, Red Cross actually flew them here to Las Vegas from Arizona. So…they are here and I am currently getting the transfusion. This just exemplifies the need for people to donate blood and platelets if they are able to.

It takes about an hour for the transfusion. You know what that means! I have a one hour date with Buddy Braun.

Buddy Braun 2

 

I also came across this great visual aid of explaining exactly what AML is and how it effects the body. I thought some of you mind find it interesting.

Visual of AML

And last but not least, I finished my ios 7 update for my iPhone! I think it will be worth it! I just need to get used to the new look and few new features. Now how’s all that for my 7th day in the hospital?!

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.

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.

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!