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…

 

 

 

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.

MARVELLOUS

A neighbor gave me an easy-reading fiction book called A Tiny Bit Marvellous by Dawn French. We could all use a bit of “marvellous-ness” in our lives, right? Its a British comedy about any normal family that has an impossible teenage daughter and a gay teenage son. I am sure we can all relate in one way or another. It has made me grin because the mother in the family goes on multiple tirades regarding normal family catastrophes and worries – such as birthday parties when her kids were little. (Yes, it starts even before Kindergarten and it gets competitive.) Which mom can throw the best birthday party? Who has the best entertainment? Who found the PERFECT party favors? (You know there’s always that one mom that hits the nail on the head year after year.) That’s when all of us regular moms throw in the towel.

The funny thing is that 6 months ago, planning a birthday party for Ava was a huge daunting task for me – and I tried to make it as simple as possible for myself. (The kids all went swimming at LifeTime and a dear friend Malene did the gift bags for me. All I did was show up.) The doctors can’t say how long I had leukemia before I was diagnosed, but I probably had it back in May (which is when Ava’s birthday is.) That’s where all my energy was going. The good part? I feel like I could plan a birthday party right now. I have a lot more energy and stamina. Maybe Grady’s party can reap the benefits of how good I feel these days! Oh wait, his birthday is 2 days before Christmas. He almost always gets screwed out of a birthday party because its so close to the holidays. #MomFail – I shouldn’t have had him so close to Christmas.

My mom left Monday morning back to her regular life in Florida. (Back to The Villages – a huge master-planned retirement community, a Disneyland for adults. Just ask her and she will tell you ALL about it.) So, for two days now, I’ve been back on kid-duty. You don’t know how good it feels to know you can operate in your normal life after you’ve been in the hospital for 2 months. You get very insulated (and possible bed sores) when you are laying in a bed all day for that long.  But, we’ve made it to school 2 mornings in a row and they weren’t left at school yesterday afternoon. (This afternoon is still up for grabs.) In all seriousness, it may not seem like a big accomplishment, but in my life right now, it is.

I head to the doctor later this week for blood work and to schedule my next round of chemo – which will put me back in the hospital. As of now, doctors plan on giving me 4 rounds of maintenance chemo. The maintenance chemo lasts for 5 days and I should be able to come home inbetween treatments as long as there are no complications or fevers.

Well, I am off to clean bathrooms and do laundry – more parts of everyday life. It may seem boring, but to me, its MARVELLOUS that I can do these things! Oh and if you have ideas for a 4-year-old birthday party, let me know. I just realized it is about a month away…poor kid! I’ll get it right one of these years!

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!

FALL

I’m going on my second month in Camp Summerlin (as my walking buddy Ilene called it.) I am going to be here for at least another month until we find out how my bone marrow reacts to the second round of chemo. Then I get to find out where my treatment and journey will take me. I am on Day 4 of chemo and that is going well. I actually feel almost too good. I feel like I could just take the darn port out of my chest and head on home – resume business as normal. (I actually almost did pull my port out yesterday by accident. It scared the $hit out of me. I’m always pretty careful because it is a needle that goes straight into my chest. I was getting up from my of-so-comfy hospital lounge chair and I stepped on my own darn lines that connect me to the pump.  That gave it a pretty nice tug. I pretty much freaked out but my nurse checked it out and it’s a-ok. Its just a little angled now but no permanent damage and it still works just fine.)

Anyway, back to the topic of conservation, we all know that I can’t just bounce back home. However, I am craving the sense of normalcy, having responsibility and enjoying the weather. I miss the everyday stuff with my kids, cuddling with my dogs and just having control over my life. Its now reached the 70’s outside – beautiful, perfect fall weather for Las Vegas. Its my favorite time of year and I can only see it from inside from my hospital room.

Gru the Bulldog

Gru the Bulldog

And...now Gru is tired.

And…now Gru is tired.

Fall and winter are also my favorite time of year because of all the holidays and traditions that Dave and I have put in place for our kids. Once I had little ones of my own, I found it very important to try and instill holiday traditions into our lives. For example, every year we go and pick our pumpkins at Gilcrease Orchard.  Gilcrease Orchard is great. Its been there forever and is very popular during the Halloween season. You pick your pumpkins off the vine, get all dusty and dirty from hiking through the patch and enjoy homemade apple cider and pumpkin donuts for your effort. Throughout the year they offer seasonal fruit that is all U-Pick. I know this is all normal for my Midwest friends and readers but its sure not the norm for here in Las Vegas!

Pumpkin Patch pic 1

 

The kids had a blast this year but I didn’t get to go. Dave and his dad took the kids. I was bummed because I couldn’t go but so glad we were able to keep up the tradition. I loved seeing the smiles on their faces from all the pictures Dave took. It made me feel like I was right there with them.

 

Pumpkin Patch pic 2

This is certainly a time of patience – something I haven’t always had a lot of. Its often said, but very true – “All things happen for a reason.”