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.

WISH ME LUCK

I have been relatively lucky with the LACK of side effects from my second round of chemo. The main issue has been my headaches and those are not caused by the chemo, but from the bleed in my head. Well, LUCKY until the past couple of days. For the past few days I have battled fevers as high as 102 degrees and I’ve also had rigors. I’ve mentioned rigors in one of my past blogs. It is a reaction to a platelet transfusion. The rigors make me shake, shiver and my teeth chatter uncontrollably. During one episode I even bit my tongue.  25 mg of Demerol is basically the only thing to stop the shaking. It really takes a lot out of you and it just makes your body TIRED. I typically sleep for 3-4 hours after each episode.  This of course has totally screwed up my sleeping schedule. I sleep during the day and then I am wide awake for most of the night.

On a much brighter note, one of my good friends from high school came to visit me yesterday! Jenny and I were pom pons together and we had a tight circle of friends. She and her husband came to Las Vegas for a quick and relaxing getaway. She sent me a message through Facebook and wanted to know if I could have visitors and if she could come to visit me. Of course! It was really nice to see her and catch up. I want to say we hadn’t seen each other in at least 9 years – and its probably been longer than that. We didn’t have as much time as we needed to really catch up on everything but I think her visit will be a kickstart for us to stay in touch on a regular basis.

Last, but not least, today is the day of the bone marrow biopsy! This will be my third bone marrow biopsy. The first one that was done was incredibly painful. They didn’t give me enough morphine and it was really excruciating.  I think at the peak of the pain, I cried out in tears that a bone marrow biopsy was worse than having a baby. I might have been a bit dramatic but the pain level was similar. The second biopsy was a completely different experience. My oncologist more than doubled my morphine dosage and injected 3 vials of lidocaine right into the site. She takes the bone marrow from my back, on either the right or left hand side of my hip. When she actually did the procedure, all I felt was pressure, NO PAIN, as she hammered a large needle into my bone. Sounds like fun, huh? As long as today goes as it did my second time around, I am not stressed or anxious about having the procedure done. I am more anxious about what the results will tell us. We should get the results 2-3 days after. The test results will tell us what the next step is in my treatment plan.

Well….wish me luck and I will try to give you an update after biopsy is done!

 

MY NEW NORMS

I know it’s been a few days since I have posted. Even my computer seems mad at me. It took awhile for it start working correctly. I’ll be honest. I just didn’t feel like being on the computer. I’ve been watching a lot of Food Network, the news and football and reading. Thankfully I have cable in my room. Its no Direct TV (which I miss dearly), but I’m not going to complain.

Today is Day 10 of being in hospital and I am certainly learning the ropes around here.  I’ve been paying more attention to all the medications they are giving me and what they are for. Its empowering to know what is going on. But after 10 days, I have started to realize that I have a whole new set of norms that are settling down for me.  There was such a big adjustment from only 10 days ago when I was at my own house, doing laundry, making meals, cleaning, (still unpacking), taking the kids to and from school to BAM! I’m at the hospital and I’m not leaving for a month.

My days are now filled with: (in no particular order)

-finding out who my nurse will be for the day (and/or night)

-getting my morning blood count and platelet numbers

-getting platelet and blood transfusions

-taking tiny cat naps but not being able to sleep at night

-having blood taken from me (thankfully I have a port-a-cath so they can now just take the blood from that instead of getting poked in the arm constantly. I’m still bruised up from blood draws and IVs.

Bruised Hand

-watching terrible daytime tv (I do make sure I try to catch Ellen. Most times I end up having the news or Judge Judy on in the background. It could make you go crazy.)

-FaceTiming with my kids (we usually Facetime after school and before they go to bed. Thank you Steve Jobs for this wonderful technology because without it, it would make things infinitely more difficult.)

-getting visits from my mom during the day and from Dave in the evenings after he is done working

-been doing a lot of reading (I’ve always been a big reader.)

-doing a lot of walking (I met a new friend who stopped by my room today who also has AML. She has been in here longer than me. She’s already shaved her head. I can’t wait to go walking with her tomorrow so I can get her insight and experiences.

-staying on top of my medications that help with a rash I’ve developed all over my stomach and sides, crazy gas pains and my constant headaches (all of these things are normal but they are still annoying). I told you once you’re in the hospital like this, you have no filter. I don’t have issues with sharing all these darn side effects. Watch out! As this goes along I could get more graphic!

-fighting fevers (I get extremely cold and shiver but my temperature will be 102 degrees. It usually breaks about an hour later where I break out into a huge sweat. This happens at least a couple times a day.)

-and then there’s the hospital food… I have much to say on this subject:

Most people are in the hospital for a day or two, maybe 3…I’ve been in here for 10 days and they expect me to be in here for at least 2-3 more weeks. Then I get to go home for a week. The reason I bring this up is because I am subject to all the hospital food on a daily basis. People make jokes about how bad hospital food is (kind of like airplane food back when they served meals in the olden days.) Well the jokes aren’t really jokes – the food is NOT good. I’ve watched enough Food Network, Master Chef, Chopped and Barefoot Contessa to make me an expert.

I have to admit breakfast is typically the best meal of the day. It is usually French toast with peaches and yogurt or some type of cereal (Cheerios, Rice Krispies) with yogurt and new obessesion canned peaches and pears and sometimes a hard-boiled egg. But really, how hard is it to mess up breakfast? Because of my low white blood cell count I can’t eat any fresh fruit or vegetables. I’m really missing them. This is called being neutropenic. Fresh fruit and veggies just have too high of a risk of bacteria being on them, even if they are washed properly.

Lunch and dinner are another story. I simply cannot eat any of their meat “products”. I can’t even be convinced that its meat. They aren’t edible. Typical lunches and dinners are roast turkey, pot roast, baked or honey Dijon chicken. I can’t even stomach them.

Turkey Dinner

They don’t do bad with their pastas though – I can eat the lasagna and stuffed shells. I’m not saying it’s a 5-star Italian restaurant but I am able to eat it. Their sides aren’t so bad – typically it is mashed potatoes, sweet mashed potatoes or a broccoli and cauliflower medley. If you noticed, there is not a lot of variety. Thankfully my house is only 1 mile from the hospital and my mom likes to cook so most nights I get home cooked meals. I am very grateful for that. Or Dave picks me up pot roast from IHOP. Don’t laugh but I love pot roast and IHOP has the best in town, hands down.  I feel so lucky that we have one within a mile of our house.

So moral of the story, be grateful and happy for the life you have now because it can change drastically in an INSTANT.  And to be clear, I am grateful and happy that I am here. I’m still alive. That’s why I titled this “MY NEW NORMS”. I’m not complaining about things, its just I have a different kind of life right now.