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…

 

 

 

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)

 

 

PAST WEEK 3

As I came into the hospital for this 3rd round of consolidation chemo, I had prepared myself for a 3 week stay. Well, 3 weeks came yesterday….so that means we are headed into week 4. I do have to say that because I prepped myself, I have been okay with being in the hospital so far. Many times as I get closer to the end of my stay, I get filled with lots of anxiety of just wanting to get out. It can start to feel like a prison and once they give me the okay to be discharged I can’t get out of here fast enough. I don’t want them to change their minds! There are obvious reasons why its a good idea to stay in here – case in point, the last bleed in my brain. Thankfully I was here so they were able to catch it right away. I have also been transfused with platelets almost every day I’ve been here.

I am at an interesting point. I MAY be done with chemo treatment. My treatment plan (and we know that always changes…) was to have 3 to 4 rounds of consolidation chemo. There is research that shows that 3 rounds is more effective than 2, but 4 rounds is not necessarily better than 3. But, their feeling is that if a patient can handle 4 rounds, then they might as well do it to make sure the leukemia doesn’t come back. However, in my case, I have gotten brain bleeds with every round of chemo but one. So, the question becomes, do I put my body through a 4th round of chemo, when it might not be necessary, and it might cause me to have another bleed. I also will have another bone marrow biopsy in about a week (they schedule it 30 days after the start of chemo). The results of that will also play into our decision of whether to have a 4th round.

So, if I am done with treatment after this round and decide to not have a 4th round of chemo, the question becomes, “What now?” I have read many other cancer patient blogs and talked with cancer survivors and this is a big transition that is somewhat overlooked. For the past 6 months, my life has been CANCER. It has been my treatment, doctors, nurses, the hospital, bone marrow biopsies, getting platelets, what are my numbers today….nothing that reflects a normal life in the real world. Now, I will be going back to normal life and to be honest, it feels really weird. I kind of don’t know what to do with myself!

I also want to be able to view myself as a cancer survivor, but I don’t get that clearance for a long time. Even after finishing up treatment, I will continue to see my oncologist for follow up visits every 3 months, then 6 months for up to 2 years. I believe that if you stay blast-free for 2 years, then they consider you in remission and that you’ve beaten leukemia! That is a long time to sit and wait. Looking over my shoulder to see if the leukemia will reappear. Or wondering if that bruise on my leg is just a bruise or if it means my platelets are low? Or if that headache is just because the kids have been crazy all day or if it means I’ve had another bleed? I anticipate that it will take a big adjustment for me during this time.

The great part about being done with treatment? I get to be home!!! I get to live normal life again, even though it may not have been the normal that it was before, it will become the new normal. Like today, Ava (my 1st grader) gave a kick-butt speech to her class today about why she should be their class president. My husband recorded it for me (thank you technology!) but I SO wish I could’ve been there in person to see it. She was so proud of herself and she should be! I look at all that she has had to deal with in the past 6 months and she is so resiliant. She is doing great in school, thriving beyond imagination and soon to be Room 44 Class President. (Who else has that to put on their resume?)

On a side note, one of my partners in crime, Ilene (walking buddy) is headed back here to Camp Summerlin tonight. Not that its great that we get put back in the hospital but I’m really excited to see her. It will help to pass these remaining days I am here a bit faster. The best part is that she likes to play rummy. That has been my new favorite passtime. Our nanny, Hailey, comes to the hospital during the week and we play. Let me tell you, the games get pretty heated! I think we are tied right now in the games we have won.

Well, that was a mish-mosh of a post. Just an update on what’s going on.