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.

HAPPY BIRTHDAY TO ME

Well I celebrated my 32nd birthday on Monday. I love having my birthday on Veterans’ Day. It always guaranteed me a day off of school or work and it made me feel really cool growing up. Birthdays take on a different feeling as you get older though. I think it hits around some time in your 30′s. It doesn’t have to be right when you turn 30 – but somewhere in that decade you start to realize you’re old. Anyway, I had a really nice 32nd birthday. I wasn’t in the hospital – so that’s a major plus right there. On Sunday, Dave and the kids took me shopping at Fashion Show Mall and I added to my Lululemon collection. On Monday, I was treated to my bone marrow biopsy that I worked myself up about – and rightfully so. It HURT. But I came home from the biopsy to homemade lasagna, chocolate cupcakes that the kids helped make and a house full of pink streamers and balloons (Barbie & Spongebob balloons.) Did I mention the 2 ziplock bags full of individually wrapped painted rocks from our backyard? Thank you Ava. They are now a filler in the bottom of one of my vases and I actually need more painted rocks! I need to get that girl back to work!

The good news of the week came on Thursday. I got the results back from my biopsy. I tend to hesitate when I say that I am going in for tests or about when the test results come back because even though the doctor tells me one thing, it always seems to end up changing. Fighting leukemia (or I suspect any type of cancer or other disease), never has a set treatment plan. There’s an “idea” of what the plan is going to look like, but it rarely turns out exactly as one would expect. So, the bottom line is that Dr. Shopick (my oncologist) believes that I am in remission (she didn’t see any blasts (leukemia cells) on the slides from the biopsy. I still have to go for 4 more rounds of maintenance chemo. As of now, (remember this can always change), I am free to stay at home the next 2 weeks (I better not get any fevers or catch a cold). Then my doc wants to admit me back into the hospital  the beginning of December. This chemo will last 5 days long (24 hours) and after the 5 days, I should be able to go home and relax for the next 3 weeks before they hit me again with more poison. Luckily, we can do all the chemo at Camp Summerliin (I miss them there) and I won’t have to go out of state. If I needed a bone marrow transplant (which my brother Braydon agreed to be a donor early on), then I would have to go to UCLA for that. Of course I would do what is best for me, but its really great I can stay in Las Vegas to get treatment. Anyway, its very hard to get into a routine or commit to much in regular life because I know I will be out of commission in 2 weeks and I’m not so sure exactly when I will get out of the hospital.

Late Friday and Saturday nights used to be filled with drinking, clubs, concerts, performances, fights…Yes, I was that girl. We always got lucky and we would find out secret musical guests, be handed free football tickets (let’s face it, Sorry UNLV you aren’t that exciting to watch – check out a Big 10 school and I will enjoy watching that), seeing 1D (One Direction for any of you living under a rock) and almost front row tickets and a meet with Justin Beiber…

Beiber & Girls

Lilly & Ava at 1D

Lilly & Ava at 1D

And….Ava got a special mesage from Carlos and James from Big Time Rush (BTR). This kid is SO lucky that she has been able to go to all these cool events and meet her idols from tv shows- something that didn’t cross my mind when I was 6. (She bettter remember all of this when she turns 16 and wants a new car.) I think I went to my first concert in like my shopmore or junior year of highschool – that’s about 15 years ago or more – and I certainly didn’t have any meet and greets!

Other exciting news in the life of a leukemia survivor (who is not completely out of the woods yet) was that I volunteered at Ava’s school today. I helped out Mr. G. (Ava’s teacher) with stapling, cutting out lamenates and I did some grading of papers. I haven’t gottem sick from the germs of 20 1st graders yet. Let’s hope it stays that way.

I came home from school still feeling like I have energy. (First day without a nap). I started cleaning/organizing/donation. Its hard because stuff is just stacked placed and I need to get it all sorted and get rid of the stuff that we really don’t need anything. It’ll get done!

So if I am quiet the next few days, it means I am cleaning, organizing or throwing more crap away.

I’M HOME

I actually got to come home on Halloween afternoon and went with to take the kids trick or treating. I was so tired after that walk around the block. I think I need some conditioning to build up my endurance a bit. I was ONLY  in the hospital for 57 days (or 8 weeks and 1 day). I guess I could cut myself a little bit of slack.

Ava as a Pirate Princess

Ava as a Pirate Princess

Grady as a Pirate

Grady as a Pirate

Since I have been home, I have really been taking it easy. I went with for swimming lessons at Lifetime on Saturday morning and I have gone along to drop off the kids at school and pick them up. I have even taken some pretty good naps.

Grady & Mom Napping

(By the way, Grady WASN’T TIRED and he was WASN’T going to take a nap. Ahh…4 year olds…)

So, you are probably wondering how all of a sudden I got to come home! It was mid-morning on Thursday (Halloween) that my oncologist came into my hospital room and told me I could go trick or treating that evening. I was really in shock. We had gotten the results back from my bone marrow biopsy and they were pretty good. My blood count numbers were also high. The doctors’ goal, in general, is to not keep you in the hospital. Sometimes your house can be cleaner than the hospital. Imagine that.

I had an office visit with the oncologist on Monday where she did more bloodwork. She was still pleasantly surprised that my body is making its own platelets and my white blood count is over 3.0. (My WBC was down to 0.2 at one point during my first round of chemo.) I am still at a risk for catching something (having a somewhat depressed immune system) but my body is in a better position to fight off a cold now than it was before. I am still a germaphobe and use Purell on myself, Dave and the kids non-stop. Better to be safe than sorry.

The plan is to do more bloodwork tomorrow and I will have another bone marrow biopsy on Monday. The results of that biopsy will tell us if there are any leukemia cells left. This determines whether I will continue on with maintenance chemo or if I will have to get a second opinion at UCLA. These treatment plans are all up in the air until we see the results and we see how my body continues to react. I am lucky right now because I have had no other side effects other than being tired. (And who wouldn’t be after coming home to a 4 and 6 year old and 3 dogs?)

It does feel great to be home. I am getting back into the routine and starting to begin to help around the house (laundry, helping with homework, and I am thinking about doing some cleaning today.) It just feels nice to have a purpose instead of being stuck in a hospital bed all day and night long.