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!

 

OVERWHELMING SUPPORT

I am truly overwhelmed by the amount of support and people reaching out since they have found out about my recent leukemia diagnosis. And by overwhelmed, I mean OVERWHELMED. I make it a point to respond to each FaceBook comment or post, each email, each text, each tweet and each comment on this blog. I want everyone to know just how much it means to me.  I have had such encouraging messages from long lost high school friends (and their parents), college sorority sisters (go AGD!), old bosses and the list goes on.

It has also renewed my faith in humanity. As we have jobs, households to care for, kids to raise, more stress and responsibility, it is very easy to focus on all of our own “problems” and put blinders on to the rest of the world. I will admit I am guilty of this. I had a very stressful past year. It was all I could do to focus on just my own crap.

I am very moved by people’s generosity. My friend (who was my attached-to-the-hip best friend in middle school) set up a donation site for me (selfless plugs are coming…). She has raised over $10,000 from this site that will help with the cost of medical expenses and treatments that I will need for at least 6 months (hopefully its not longer than that!) Click here to check it out.

My husband has set up a t-shirt fundraiser so you can all have t-shirts that help show your support of me getting better. (I thought it was an adorable idea. He designed the t-shirts and didn’t even tell me until the site went up and they were ready for purchase. There has been such a great response to them-makes me feel all warm inside.

T-shirt Fundraiser

Here’s the logo for the orange t-shirts. Click here to purchase a t-shirt of your own.

Even my neighbor’s son (a great soccer player) wanted to give me support on the soccer field. He asked his mom to buy orange laces to go in his cleats for the soccer season. How sweet! When I get out of this place, I will need to go support him at some of his soccer games. Its the least I can do.

Cole's Soccer Laces

I’ve learned a lot about myself  being more kind and thoughtful to others in a fast 3 weeks. It has humbled me and put my faith back in humanity and made me realize there really ARE good people out there.

THANK YOU NURSES AND GOOD TEST REPORT

Nurse Appreciation Photo

I just had to show Sam, one of my favorite day-time nurses, this picture. I mean thank you FaceBook, how could we be witty without you?! Sam did crack up and accepted my appreciation of her.

On a great note, I got some promising test results back last night. My FLT3 test came back negative! When a patient has AML, they take a blood test that is called FLT3 Test. A FLT3 mutation is a genetic mutation that may be screened during genetic testing, when diagnosed with AML. The FLT3 gene has demonstrated ability to predict a patient’s likelihood to benefit from therapy as well as their risk of experiencing a disease recurrence. This means regular chemo should give me a VERY good chance of going into remission and I have a much smaller chance of recurrence. This is FABULOUS news.

In more seductive news, the nursing staff has noticed that Buddy Braun and I have been taking more walks around the hospital floor. I hope Dave doesn’t get wind of our moonlighting! (Just kidding, most evenings Dave joins me on my night walk.) As bored as I get in this room each day, I’m still never alone.

Buddy Braun