BYE BYE BARBARA, HELLO MANDY

Barbara Walters and I are both at home now…but what eaactly does that mean? Do you really think Babs has announced that since Friday was her last day, she’s going to go home and just sit on her ass this week going forward? For some reason, I highly doubt it.  I have kept quiet the past 6 weeks because I chose to. I was having so much of a good time in the hospital – I really hope you catch my scaecasm. I was in there for my 4th round of consolidation chemo (that’s 6 totals rounds of chemo, if you’re really keeping track.) I spent Mothers’ Day in the hospital and was able to come home last Monday evening. Just in this past week’s time, lots has gone on. I do know one thing that Babs and I have in common is that we aren’t going to just go home and sit on our butts and twiddle our thumbs.

 

Mothers Day 2014

 

Mothers Day 2014 in Summerlin Hospital

After being gone from your home, family, kids and dogs for close to 6 weeks, it is VERY hard to get back into their routine. Let’s face it, they have their own thing going on and I”m the afterthought kind of when I come back home from the hospital. Its not their fault, that is just what just naturally happens. It is also harder to get back into any sort of routine when you feel weak, tired and have no energy. This is not a post to make anyone feel bad, its more of an eye-opener for anyone not realizing some of the ins and outs that I (and my family) go through. I want to make my fellow cancer friends realize they are not alone. And believe me, this isn’t the only one.

It is exciting to be home and very hard to take it easy. Its the hardest thing to do in the world, probably even more so when you have kids. It is also one of the most important things to do. The last thing I want to do right now is push myself and end up back in the hopital – which has happened to me and I know to many others too many times. I will say right now the food is WAY better at home than at the hospital….well except when my friend Jackie brings me yummy food to the hospital and that’s a whole different story. (I can’t imagine what she has done with herself for this past week because I feel like she made that her job for this last time I was in the hospital.)

There seems to be so much to do, errands to run and school events to attend. The school events are only multiplying because we are coming up on the end of the year. But I’m trying very hard to pace myself. A trip to Target is planned around a nap, parking as close to the entrance as possible and grabbing a kid car cart so that I can get pushed around the store when I get tired. I know it may seem silly to you, but don’t take those Target trips for granted. I can barely walk through the store and get everything on this list. I get incredibly tired.

I was able to make it to my daughter’s classroom last week (thank you Hailey for driving us to school and back) for the Tie Fashion Show for their 1st grade class. It brings me such joy being able to be there.

Tie Fashion Show 2014

 

 

 

I’ve literally been in treatment this whole school year and who knows what is to come. I like to take a day at a time. If the doctors can tell me exactly what to expect, then that certainly gives me a lot of confidence. The problem is that they rarely seen to agree. I’ve listened to learn more from my own body, my loved ones and my consistant, passionate nurses. We are the ones that are in throes of fighting this terrible disease that I wish never existed.

I hope Babs has been eating and paying attention to her weight. That is one of my many jobs. Eat and gain weight. Its quite the opposite of what my life was before leukemia. I tried to eat as least as possible in hopes of of losing that last 5-10 lbs. Now I eat all I can to bring up my mere 105 lbs to a respectable number.

 

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EXCITED FOR MY DAY TO COME – GUEST BLOG BY KATIE POWELL

Katie Powell, a student nurse of mine, was so interested when I told her about my blog. She offered to write a blog as a guest blogger and I took her up on her offer! I thought it would be great to get a viewpoint from a nurse. And she has a unique viewpoint because her best friend was diagnosed with a rare form of breast cancer and Katie was with her fighting every step of the way.

Here you go! Thank you Katie!:

I first met Amanda at Camp Summerlin when I was her student nurse for the day. As students we have to go in and “research” our patients the day before so we know how to take care of them. As I was “researching” Amanda I knew I was meeting a special person, mostly because she was similar in many ways to my best friend, Ashley. Ashley had just recently been diagnosed with a very aggressive breast cancer. Besides both having names that start with “A” and being really awesome people, they were similar ages and both had families. I was lucky enough to be Amanda’s student nurse several times at Camp Summerlin and one day the idea came up that I would write a guest blog post for her. I must confess, this was ages ago, she probably forgot all about it! Anyway, I finally thought of an awesome topic to write on and here it goes, this is my first blog post ever, mind you!

My best friend lives in our home state, and hometown (not that any of you have ever heard of it) of Everson, WA. Throughout her treatment and my schooling we have actually managed to see each other fairly frequently. I want to write about the trip she made in which we were celebrating her partner, Clayton’s, birthday and her being all done with chemo. It was just an awesome and happy time that we all celebrated and enjoyed our friendships and the gift of health.

It was late August and they arrived during the tail-end of my finals week. We had planned to rent a pontoon boat on the day of my last final because I would be getting done early in the morning. The day before we all went to the pool at their hotel and later they came over for an informal BBQ. Ashley and I were both exhausted: me from school and she was still recovering, so we flopped on a comfy couch and took a nap together. My Hubby and Clayton went to the store and prepared a really delicious feast of grilled leg-of-lamb, brussels sprouts, and zucchini. I LOVE lamb but Hubby doesn’t really care for it so any time I get to eat it it’s a real treat. After our awesome food we brought “the kids” back to their hotel room and I promised to pick them up as soon as my final was over the next morning.

The next day I took my test and I probably should have studied for it. I passed it, but I didn’t get as good of a grade as I could have. My thinking at the time was that friends and memories were more important. I went straight to their hotel room with coffees and muffins. Ashley was feeling sick, sick, sick, but was determined not to miss out on the fun afternoon. I had to give her a shot to stimulate white blood cell production in her body and made her take some Zofran for nausea and we were on our way. We managed to pick up Hubby, pack a cooler with drinks and leftovers, ice, and towels, and make it to Lake Mead in an hour and a half.

Once we got the boat and got on the water, it was just amazing. I love the feeling of being on the water. It is refreshing and calming and wonderful. It feels better than anything I can think of. We spent the day exploring the coves and nooks and crannies on the shore, jumping in the lake, and playing king-of-the-inner-tube. I had shaved my head once Ashley lost her hair to the chemo and the boys kept commenting on how cute it was to see us as little bald heads bobbing in the water. They said it had been easy to spot us at the pool the day before because we were the only bald people with bikinis on, haha. Life had kind of stopped for Ashley when she was diagnosed and things got kind of dark for awhile, but that day and that trip put the spark back in her. She is now about to finish her undergrad in business and communications and will hear shortly if she was accepted into graduate school. She is smart as a whip and ambitious to boot so I know she will be successful. I can’t wait to read a blog by Amanda that details how she celebrated her “done-with-chemo” day.

 

 

Katie & Ashley in their wigs

Katie & Ashley in their wigs

I want to thank Katie for her contribution to my blog! I certainly look forward to the type of day that Ashley had. The hard part about leukemia (and I guess most cancer) is that there is always a chance of relapse. I can just only hope and pray that a relapse doesn’t happen to me. When I get to that point though, I feel like I will always be looking over my shoulder, hoping that it doesn’t return. This just gives us an important lesson to live every day to its fullest and to live without regret. The fact is that we will all leave this Earth one day. Take advantage of the days now with our loved ones and don’t fret over what might happen in the future.

 

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.