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…

 

 

 

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.

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.

FEVERS + A CANCER PATIENT = THE ER

If you “Like” my Facebook page or you are my Facebook friend, then you’ll already know I am back in the hospital. My last post was on Saturday and it was titled “I’m Exhausted”. Well, no crap I was exhausted – I couldn’t even spell anything correctly – much less keep my eyes open. The chemo was doing its job and it was making my body crash. I was doing too much at home anyway with all the Christmas and birthday errands. As a cancer/chemo patient (or at least for me), I know in my head that I need to take it easy. However, when you have those periods of time when you do feel good, you just want to do as much as you can because you do feel good! So, I was out-doing myself and my chemo was doing its job.

I fell asleep on the couch Sunday afternoon sitting up and apparently I was trying to pretend I wasn’t sleeping but chose to stay on the couch and not go up to bed. I slept straight through until about 4 am Monday morning.

Me Sleeping Sitting Up

I woke up freezing cold (Yes, it does get cold here in Vegas. My mom will even back that up because she lives in Florida and its still in the 70′s-80′s there right now.) But, my coldness was most likely due to my fever and body aches. I had been working on getting an office visit with my oncologist since I had been discharged from the hospital. I needed blood work done to see where my blood counts were headed. That hadn’t been quite so successful (a story for another time, but one of the reasons I am now working on getting a second opinion hopefully at UCLA.) By mid-morning, I took my temperature and it read 102.8, then 101.8. I was pretty sure I needed to head to the ER. I called my oncologist’s office and the nurse immediately agreed that I just needed to go to the ER.

The ER (at any hospital) is never a fun place to go. It is usually the starting point for going into the hospital for anything you might have. So, while ER nurses have a very broad-based knowledge (because I am sure they have seen just about everything), they don’t have the more specific knowledge that a cancer patient and a cancer nurse/doctor might have. So, that can be frustrating. I just wanted to get up to my 4th floor, to the nurses I knew, and get the ball rolling in making me feel better. Because of the smaller oncology/chemo beds they have here they didn’t have a 4th Floor bed available right away. I was in an ER isolation room from 11:30 am on Monday morning until they transferred me up to my 4th floor at 3 am on Tuesday. Ironically, Summerlin Hospital has been working on a larger wing for oncology and chemo beds and I was the FIRST one in it on Tuesday! I got to pick which room I wanted, so I really moved rooms twice on Tuesday.

One of my favorite nurses, Melody and I on the new oncology wing.

One of my favorite nurses, Melody and I on the new oncology wing.

When I arrived in the ER, my blood counts were all incredibly low, I don’t know how I was even functioning. To be honest I really didn’t feel that bad. I just know that fevers are bad news with cancer patients. They have been treating me for fevers and infection and giving me lots of red blood cell and platelet transfusions. My son’s 4th birthday is on Monday, so I REALLY hope to be home by Monday. If not then, then Christmas Eve will do as well. Actually I know I have to stay in here as long as I have to but I pretend sometimes that I am in charge of my own body. I’m obviously not because it hasn’t been doing what I’ve been telling it to do! Ha Ha Ha

Its all a big, long, arduous, painful learning process. And when you have a bump in the road (even though you have a good idea its going to be there anyway), its still tough mentally and physically to endure it all. I want my treatments to be effective and efficient (I know you’re saying, “In your dreams Amanda”) so I can just get this done with and my kids won’t have to remember all the times I couldn’t be there because I was stuck in the hospital. I feel like the younger they are, the less they will remember. I will talk to them about it when they are older and they can understand but right now I just want them to be kids! And they grow up so fast! Any parent can tell you they grow up too fast. So, if you have kids, go give them an extra hug and kiss tonight or this morining (whenever you are reading this.) Depending on their age, they may look at you funny but who cares. They are always going to get lots of hugs and kisses from me whether they like it or not! We do hugs and kisses on FaceTime every night.

THE ART OF HAPPINESS

I think I failed to mention that when I was first admitted to the hospital and diagnosed with AML, they also found a subdural hemorrhage on the left side of my brain. What the “H-E-double hockey sticks” does that mean? It means I had a bleed in the front, left hand side of my brain. Kinda scary. Before I came to the hospital, I had a weekend where I was really sick and violently vomiting. My doctor thinks that is what caused the bleed. My doctors have been watching me closely. I have been getting regular CT scans and MRI’s of my brain and the results have shown that the bleed stabilized. Yesterday I started getting headaches again and this prompted another CT scan. The scan showed a trace of new blood on the left side of my brain. They watch me very closely because if I have low platelet levels (which means my blood doesn’t clot very well) and I have a bleed, then we have a problem.

Unfortunately, Camp Summerlin (the fond nickname we have here for Summerlin Hospital) doesn’t have a neurosurgeon so I have been transported (yes, in an ambulance but they don’t turn the lights and sirens on) to Valley Hospital. Valley Hospital is an older hospital but there are good doctors here. Camp Summerlin is only 3 minutes from my house. Valley Hospital is probably a good 15-20 minutes away. It just makes it a bit more inconvenient but if they can get the bleed and headaches under control, then its worth seeing the neurosurgeon here. I am told I’ll only be here at Valley for a couple days in the Surgical ICU unit and then I can be transported back to Summerlin. I can get back to everything that I know and am used to.

As I have mentioned in previous posts, you just have to go with the flow. Treatment plans, timing, medications can all change on a daily basis so you have to have an open mind. Its ironic (well not actually ironic because I do believe everything happens for a reason) because I have had a couple lengthy conversations with my GI doc about a book called “Zen: The Art of Happiness” by Chris Prentiss. It is a short book – around 50 pages – and a wonderful read. Its not a foofy, feather-filled book about how to make your life better. It is based on the ancient practice of Zen, modern day illustrations and scientific research that shows how you can truly find happiness for yourself. I highly recommend it because it forces you to look at your life and the Universe in a completely different way than what society has taught us to look at and react to life. I have found the book very comforting during the past week and I have found myself re-reading portions that really speak to me. I was starting to get angry and upset that I was sick and stuck in the hospital. This book gave me a different perspective. I really didn’t want to get this news on my CT scan and I didn’t want to have to come to Valley. But today, I was not upset. I feel positive about what the outcome is going to be and when I will be able to speak with the neurosurgeon.