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.

 

I’M BACK FROM MD ANDERSON

Okay…Well, I have been back for a week. THANK YOU to everyone that has texted, called or emailed me to find out what the doctors said. And I am sorry I haven’t gotten back to you. To be very honest, I have been tired and overwhelmed with no energy to get back to everyone. I guess that’s partly why I started this blog, to keep all of you who care, in the loop. (Well, also because there’s lots of times I can’t sleep or I get super bored in the hospital so it gives me something to do…I said I was being honest.) So here it goes….

It was a whirwind of a trip and all thank you to my GOOD friend Jackie and her husband Cary – some of the most kind, generous and caring people that have entered my life, let alone graced this Earth. I probably will never be able to thank them enough. We got all of my testing and doctor’s appointment all done last Monday. We thought we would need to stay until Wednesday but they wasted no time. My bone marrow biopsy was the last thing I had done Monday afternoon. It was NOT FUN and probably one of the worst I’ve had. I guess Jackie can attest to that because all I keep repeating on the car ride from MD Anderson to the Four Seasons (a 4-mile trip) was, “That was bad. That was bad.” But guess what? I survived.

Jackie was able to arrange for us to fly back home Monday night. So after a crazy cab ride to the airport (he didn’t know where he was going and was a terrible driver) and 3 rounds of throw-up (by me, not Jackie), we were able to board the plane and make the 4-hour flight home. We both slept the whole time.

The only downfall of us making such a short trip is that we weren’t able to explore MD Anderson more. I know we only saw about 1% of the whole place. And here’s the proof:

MD Anderson

 

The only damn picture that I have of the whole place.

I was planning on taking more on Tuesday… It reminded me of a small college campus – multiple buildings and just huge for a hospital. There’s a reason why people go there. It was extremely organized and efficient for such a large place. When I say “We” (I mean Jackie and I) planned on venturing out and doing some exploring on Tuesday….well okay and maybe enjoying the spa at the Four Seasons….but it all worked out just how it was supposed to!

So, you’re on the edge of your seat….”What did the doctor say?”

The doctor said…we’ve done everything right so far. My doctor here said their standard here is 3-4 rounds of consolidation (maintenance chemo.) I have completed 3 rounds. Almost every time I have chemo, I get a brain bleeed. That equals bad. I think if given her choice here, we would have stopped at 3 rounds of chemo. The doctor at MD Anderson highly suggests the 4th round of chemo; despite the risk of another brain bleed. The standard at MD Anderson is 6 rounds of chemo.

There are some tests that should have been done here in Las Vegas that weren’t done. Needless to say, they are being done now. MD Anderson also has the abilities to do extensive further testing because they are a teaching hospital. We should be getting the results of those tests soon. My brain bleeds? They don’t have a good answer – its my anatomy. There is no way to prevent them, except to keep my platelet counts up. We know that chemo is designed to wipe out my blood counts. Its a catch-22. So, that is why I stay in the hospital for at least a month at a time after chemo so they can monitor me: check my platelets daily (at least) and give me platelet transfusions if I need them (which is usually around 2 units of platelets a day.) It is very important that I get A- platelets (my blood type, irradiated and from a single donor.) These are all things that help prevent me from reacting to receiving the platelets. (Its just like getting a reaction when you put anything foreign into your body.) Its also why its so important to become a platelet donor if you can. Its very similar to giving blood. I can sometimes wait for up to 12 hours while they fly my platelets into Las Vegas from Arizona. Thankfully, Cary is A- and willing to donate his platelets to me. They will be a great backup and once again, another reason, for a big thank you.

So, in real terms, what does this mean? I thought I was done with chemo, but I’m not. I am headed into Camp Summerlin this coming Wednesday for another round of chemo. I plan on being there for over a month and I kind of get how the drill goes…it doesn’t mean that I don’t get anxious beforehand. Its not the most fun place to be when I could be home enjoying my daughter’s tennis lessons, my son’s t-ball games or just sitting on the couch and being able to pause and rewind my tv because I have Direct TV. (Let’s face it, sometimes it is just the small things that make us happy.) Its also funny because when I am home during the day, I really don’t watch that much tv.

Supposedly, after this 4th round of chemo, I should be done. Monthly blood tests should show that I am clear of leukemia. If it stays gone for 2 years, then “Peace Out, Leukemia.” If it comes back in that time period, I could be a candidate for a transplant. But we have time before we get to that point. Uncle Braydon better be living a clean lifestyle because the’s my first go-to to find a bone marrow transplant donor.

Well, that’s the basics of our trip and I am grateful that I got to go. We are certainly changing our original course of action and I can only hope that keeps me around a little bit longer!. I give my love and prayers to the Rowe family that live here in Las Vegas and lost their dad to AML just this past week. He left behind a wife and 4 beautiful daughters aged 10-16. I am also sending happy thoughts to Ilene (my walking partner) who had a bone marrow biopsy at MD Anderson today and gets her results tomorrow.

I am sure I will have much more to fill in on…and I’ll have more time on my hands come Wednesday. Stay strong and positive, and pray for these people that need uplighting in their hearts

MD ANDERSON, HERE I COME!

I have great news. I have had an eventful day and look forward to tomorrow. A very gracious, generous and kind family has insisted that I go to MD Anderson in Houston, TX for a second opinion regarding my AML. For those of you who don’t know, MD Anderson is a leader in leukemia treatment and research. It is also one of the largest cancer centers in the United States. I count my blessings that I have the opportunity to get a second opinion here. A BIG thank you goes out to Jackie and Cary for making this possible. I guess to put in the most simple terms, I can’t express my appreciation enough.

After lots of convicing, we are here. I had a first by flying on a private plane today – and let me tell you – that’s the way to fly. (I am sure I don’t need to convince any of you out there.) There was no waiting in security lines, no dealing with tiresome TSA agents or and no waiting for our plane to leave. We walked out onto the tarmacc, the pilots loaded our luggage onto the plane and we took our seats. It took an exact 3 hours from Las Vegas to Houston. Talk about easy!

Texas is two hours ahead of Las Vegas, so it was pretty much bedtime by the time we got to the hotel. Of course I can’t sleep because I anticipate a big day tomorrow. I have been fortunate enough to get an appointment with a top oncologist, Dr. Cortes (who I am told is a well-respected and well-known doctor in the leukemia and cancer field.)

I know tomorrow will be a long and tiresome day. It will be filled with meeting Dr. Cortes, blood work, another bone marrow biopsy (not looking forward to that), x-rays and CT scans. We hope to be done by 5 in the evening. Maybe when we are done, it will give us an opportunity to explore Houston. Neither Jackie nor I have been to Texas before, so it should be quite the treat. However, we did leave our cowboy hats and cowboy boots at home. I hope that wasn’t a mistake. It is rainy here and should be for the next 3 days – which is how long MD Anderson has prepared us to stay. We are typical Las Vegas girls – we think its too cold here. I do welcome the stormy, cooler weather because we rarely get that in Las Vegas.

The good news is that I have a whole big bed all to myself. Its a far cry from my hospital bed. (I was just released from Camp Summerlin this morning.) I am enjoying a lovely down comforter and lots of fluffy pillows. I plan on sleeping right smack dab in the niddle of the bed. I also don’t have to share the bed with dogs and kids. I am not sure what to do with myself.  Hopwfully it should assure me a good night’s rest….I just hope I can get to sleep.

Four Seasons Bed

Here’s another first…each bathroom in our hotel rooms have a bidet (pronounced ba-day.) I believe bidets are typically found in a) very nice houses or b) in Europe or Latin America….or I guess nice hotels (as proven today.) This raises the question…how does a bidet actually work? I kept looking at it, trying to figure it out. It seems complicated. I almost feel like I should try it out just for s$@&’s and giggles. But for some reason, I think its designed more for men than women. I guess you learn something new every day… it was something fun to Google. If you’re interested, here’s how to use one. I hope you find the information handy one day. You never know when the information can become useful.

Bidet

Wish me luck tomorrow. I am excited to go. I am anxious to see what they have to say and dreading the bone marrow biopsy. I have been told by my friend (and walking partner Ilene) that MD Anderson is large, beautiful and somewhat overwhelming. I can’t wait to take some pictures and enjoy my time here. I will try and keep this updated throughout my stay. I am sure I’ll learn a lot!

 

 

 

THE FLU IS NO FUN

The flu needs to go jump off a cliff. It has hit our family twice now this flu season and my littlest one even got his flu shot. Good that did to any of us! To make a long, graphic story short (believe me you don’t want to hear the details – my husband will attest to that),  I ended back in the ER this past Saturday night. I had only gone home the Monday before. So, I got to spend a whole 6 glorious days at home. Coming back to the hospital was not in my planned near- future.

But, nonetheless, here I am…trying to make the best of it. And, me being a hospital pro at this point, I am still not sure how to make the best of it. There is still only so much tv you can watch, books you can read and games you can play without getting bored. I still sit here and worry about my kids, my family, my dogs…while even though I know they miss me, its more important that I get back to normal so I can stay home for good.

I am not sure when I am getting back out. My numbers keep fluctuating because of this bug that I picked up. I have been run through the ringer of tests (I really can’t imagine there are any left to put me through). They do it only to rule out any other possibilities.  Its hard to predict – like like everything else cancer-related. It has no timeline but its own. Glad I am slowly learning the art of patience and flexibility. (I think that’s my ending message in the majority of my posts…) Sorry for being “so original” but that must mean its an important thing to remember (especially for other and their families that are going through something similar.)

 

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)