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!

 

 

 

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.

 

 

THE BONE MARROW BIOPSY

The plan was to have my bone marrow biopsy on Monday, Oct. 28. For unknown reasons, other than that hospitals are on their own time schedule, my biopsy got pushed to Tuesday morning, which turned into Tuesday afternoon…you get the picture. I finally was in the procedure room around 1 in the afternoon on Tuesday. It wasn’t my doctor doing the procedure and they gave me different medication than what I had received last time. Needless to say, I was a bit apprehensive. There is something to be said about intuition because it didn’t go as smoothly as I wished it had gone. Oh well! Remember that book I told you to read, Zen: The Art of Happiness? Yeah, I am sure you all went out to get it and you’ve already read the whole thing. Okay, I know that’s not the case, but it still should be on your “To-Read List”. One of its main points is how to find the positive things in crappy and even terrible situations. I’m sure it is something that each of us can benefit from in our lives. So…the bone marrow biopsy was not the lovely event that I thought it was going to be, but at least it is over with. And now we await the results. It probably won’t be until the end of the week or the beginning of next week to find out what our next step is in my treatment plan.

In unrelated leukemia news (other than the fact that I am hospital-ridden, so I actually have time for these things), I have been sucked in the world of Game of Thrones. Thank you once again Steve Jobs and Jackie. I have season 1 of GOT under my belt and will start season 2 when I know I can keep my eyes open. Its not that the show is boring, it’s the darn meds that I am on. Promise! I also started a new book today called Farm City: The Education of an Urban Farmer by Novella Carpenter. It’s a fiction book based on a woman who lives in Oakland, CA and makes her backyard (well abandoned land right next to her apartment) into a garden and mini-farm. I’m only a fourth of the way through the book, but its light reading, interesting and humorous. Its giving us all the message that its not that hard to grow vegetables and raise chickens for our own consumption. I guess Carpenter didn’t get the message that I’ve killed every houseplant I’ve ever had. Don’t get me wrong, I do think buying local and pesticide/hormone-free products if possible is the way to go. I just don’t foresee gardening or plucking turkeys in my near future.

Today was really a quiet day. I am still battling headaches. The spot in my lower back where the doctor hammered a big needle into it is quite sore. Imagine that. I plan on going on a walk before I settle in for a night of Modern Family…and whatever that new comedy is that’s on afterwards. (Not sure if it’s a good sign that I can’t remember the show’s name, but I find it somewhat entertaining.)

Be looking for tomorrow’s blog – my brother Braydon is organizing a benefit concert for all of you Chicago people! I will be giving you ALL of the info tomorrow! And just another thank you to everyone that follows the blog and to all the people who have given such awesome support. It means the world to me.

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!

 

THANK YOU STEVE JOBS

My recent absence can be blamed on Apple TV. (Thank you from the bottom of my heart, Jackie. And thank you Steve Jobs for inventing the Apple TV.) I was behind on two great shows – “Mad Men” and “Breaking Bad”. I had marathons of both shows over the past few days – ever since I got back from Valley Hospital. After I watch the series finale of “Breaking Bad” (which wil be today), I have the important decision of deciding which series will be next. The contenders are “Game of Thrones”, “Homeland”, “Masters of Sex”, “Boardwalk Empire” and whatever else may tickle my fancy.

I was at Valley Hospital for less than 24 hours. The neurosurgeon looked at my CT scan and decided that the bleed was stable and they would not be operating on me. They packed me back up and sent me back to Camp Summerlin. The good thing was that I got a new room at Summerlin and now I have a view of the mountains and I can see the sunrise if I’m up that early in the morning. Its the little things that you learn to appreciate. I was also glad to be back at Summerlin because it is what I am used to – the routine, my favorite nurses and our refrigerator stocked with chocolate pudding and ice cream. Valley Hospital did not have a stocked patient refrigerator.

Unfortunately, I am still having headache issues due to the bleed. As I mentioned, the bleed is stable. When someone has a bleed like that, the brain can heal itself and the blood reabsorbs back into the brain. The downside is that it can cause headaches for months afterwards and that is what is happening to me now. I have been working with my attending physician and a neurologist to get the right medications in place so that I am not always in pain.

On Monday I will have a bone marrow biopsy and we typically get results 3-4 days later. The results from the biopsy will help guide us in the next steps of my treatment plan.