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.

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.

The Robe

Today is one week since I finished round 2 of chemo. According to my oncologist (and from my experience the first time around) this is about the time side effects start setting in because my numbers are starting to drop more and more. When your blood count numbers are low, that means your immune system is compromised, so you are more susceptible to side effects. For example, this afternoon my extremities (hands, feet, head and nose) got really cold and they just wouldn’t warm up. I bundled up in my awesome neon pink Target robe (thank you Michelle!) and turned up the heat in my room. I wear my robe on my walks and you wouldn’t believe all the compliments I get.

Pink Robe

I got confirmation today that I will be in the hospital (except for a few two-day visits at home) for at least the next 4-6 months. This is basically regardless of what kind of treatment plan my oncologist thinks is best. My two options will be either a bone marrow transplant or I go into remission (which then means I have to do “maintenance chemo”.) We (meaning me, Dave and my mom) all knew that fighting leukemia wasn’t a sprint but a marathon. But, by having Dr. Wareman say the words out loud, she really gave it some substance. Its really making me think. I wasn’t upset by the news. It was just more of an eye opener.

I feel like I have been bored and somewhat mindless the past few days. I know my main goal is to get better in here but it really tests your patience when you are confined to a place and you can’t do as you please. I spend my days pretty much mindless things – reading books, watching tv, playing Candy Crush, doing word finds and going for walks. Of course I work on my blog as well. This blog is an outlet for me and it gives me a purpose. Thank goodness for my mom who comes and is with me the majority of each day and Dave who comes every night after work. But knowing that I am going to have an extended period of time in here, I really feel the need to have something to do that has a purpose or goal.  So if anyone has any brilliant online business ideas that I can do while sitting in my hospital bed, please share!

FINISHED WITH 2ND ROUND

I finished my second round of chemo Friday night around midnight. I was glad to have that over – not that I got sick or was uncomfortable but its more of a mental accomplishment. I am one step closer to getting treatment over and there is something about being CONSTANTLY hooked up to a machine. During chemo, I was only unhooked for about 10 minutes a day so that I could shower. I would get clean and change my clothes and then Mr. Buddy Braun was my pal once again.

Everyone keeps asking, “What is the plan?” Good question. This is what I know so far – and remember things can always change. My oncologist, Dr. Wareman, will do another bone marrow biopsy in about 2 weeks from now. The biopsy entails her literally hammering into my back above my right or left hip to get samples of my bone marrow. All I have to say is THANK GOD for morphine. She will get the results back from the biopsy 3-4 days after that. If there are no blasts (leukemia cells) then I believe I just go onto maintenance chemo and may have an opportunity to go home at some point. (I’m not sure how that all works.) If there are blasts left, then we consider a bone marrow transplant. Transplants are actually pretty common and sometimes the preferred treatment option for leukemia patients. They would clear out ALL of my bone marrow through a super-charged type of chemo then give me new bone marrow from a donor. Its kind of like wiping the slate clean and starting all over. So, for now, I’m just dealing with lovely little side effects that come with having chemo and waiting to find out how my body responds to this latest round of chemo.

Speaking of bone marrow transplants…when you get a transplant, you obviously need a donor. The best chance of finding a match is if you have a sibling. Lucky for me I do! My brother, Braydon, who is 4 years younger than me, agreed to donate his marrow if we are a match. (He better have said yes or I would have kicked his you-know-what like I did when we were little. We played a lot of WWF Wrestling.) Testing for a match and the actual donation process is basically painless. I think back in the day it was a lot more involved, so we are lucky to have made such strides in medical treatments and technology. Braydon got to hear all of this information straight from my oncologist because he came from Chicago this past weekend to visit. I was glad he got to meet Dr. Wareman firsthand and hear how the procedure would go if he is indeed a match.

Uncle Braydon & Grady

Uncle Braydon & Grady

The visit with Braydon was great. He and I stay in touch through talking and texting but I hadn’t actually seen Braydon in about a year and a half. He came up to the hospital for the majority of the three days he was here. He got to enjoy the super comfy hospital lounge chair. (I go all out for my visitors!) We just chatted, went for walks and enjoyed multiple episodes of mindless tv, such as American Restoration on the History Channel. (Its actually an interesting show. It is set in Las Vegas and is a spin-off of Pawn Stars. We learned a lot about old Harleys, Coca-Cola machines and trains.)

Just a quick reminder, t-shirts are now available for order again. Many people missed the ordering deadline the first time around and wanted to know if they could still get shirts. Well, here is your opportunity! You have until November 11th to order and they will be delivered straight to you by Thanksgiving. Thank you in advance for all of your support.

Kiddos supporting their momma!

Kiddos supporting their momma!

Click here to order your t-shirt!

HOSPITAL SITCOM

I will first give you an update, then get into the funny stuff. I am still on my second round of chemo (to catch up those of you who aren’t up-to-date) and I am on Day 6. That means I have one more bag of the poison and that will be in my body by tomorrow around midnight. Then I will have about a week (hopefully) of no major side effects, and then after that, that’s when the fun begins. Side effects can include fevers, chills, night sweats, hemmoroids, rashes, weakness, loss of appetite and stomach issues. That’s only skimming the surface. The first time around, I was lucky enough to avoid the nausea, mouth full of canker sores, metallic taste in my mouth and the fairly long list of other possible side effects. Believe me: I AM GRATEFUL. My blood counts are high and my doctors are happy. All is well in Camp Summerlin for today.

So now we address the possibility of me creating a sitcom. (Now I am very new to this blogging stuff so you can see I am very balls-to-the-wall in this whole new career I am creating for myself. What else do I have to do while sitting here in the hospital bed? I might as well dream big!) Anyway, the premise for the sitcom: Its about all the abnormal $hit that happens around Camp Summerlin but seems all VERY normal for us that are here day in and day out. The idea came from my dear friend Malene who is Danish. She said us Americans may not find it hysterical but it would be a hit in Denmark. (They have a different kind of sense of humor than we do.) So…now I am thinking…I might need to find a Danish producer and production company. Ahh…just minor details.

Denmark_flag

So I have just a few examples of what would be included in the pilot episode. (All events actually took place.)

Incident #1: I told you $hit went on in here – literally. I pride myself on my multiple walks that I take daily. Even though my walking buddies left me, I have kept up the trekking. Its so important to keep moving and stay active whether you have a disease or are completely healthy. (Blah, blah, we all know that, right?) I am one of the youngest on my floor so there are patients that are much older and in worse condition than me. I am self-sufficient but others can’t get to the bathroom on their own and have to wear Depends. (This is going to bite me in the a$$ because one day I am going to be the one in the Depends.) Anyway, I was taking my nightly walk and I just could not get away from THE SMELL. Someone had just done a Number Two and there was no escaping it. I even had my mask on and I was still being inundated from the odor. Needless to say, I cut my walk short. But, like I said, normal occurance in a day at Camp Summerlin. I hope one of the nurses grabbed the air freshener and sprayed the crap out of the hallway.

Incident #2: My floor is split between chemo/oncology patients and the cardiac unit. Cardiac patients come here to recover from open heart surgery, removed lungs, etc. The cardiac patients do not have private bathrooms. They just have a toilet in their room and a curtain to give them privacy when they do their business. There are no doors because back in the day heart patients would go in the bathroom, lock the door and then pass out or have a heart attack and the nurses couldn’t get in. Therefore, the policy was changed. For some reason, the toilets are positioned toward the front of the room and there’s a window with blinds right there as well. You know where I’m going with this. As I take my walks, I have more than once walked past a room with the privacy curtain closed and the blinds WIDE open. Only for me to happen to see an old gray-haired man taking a pee. A normal occurance in a day at Camp Summerlin.

Incident #3: Same scenario – I’m taking a walk. (13 laps around both nurses’ stations is a mile by the way.) I happen to look into an open door to a patient’s room. (I feel like a peeker but I can’t help it. If you don’t want people to look in your room, then close your door!) Anyway, there was another elderly gray-haired man standing with his back to me. The back of his hospital gown was just WIDE open. Can we say a FULL moon? Believe me, I kept walking – and quickly.

Full Moon

Incident #4: I was getting my mask on to go for a walk. (Maybe these darn walks are the cause of my problems. If I just became a hermit and stayed in my room all the time, I wouldn’t have to endure these episodes. Ehh…that’s too boring.) My mask was on and I hd my trusty pump (Mr. Buddy Braun) with me. I encountered an older lady in her 70’s with her super comfy hospital lounge chair in the middle of the hallway (not really normal.) She does have a nurse with her (a good sign) and they are trying to get her out of her chair to take a stroll. Apparently, she has Alzheimer’s so she doesn’t really know where she is, what’s she’s doing here and she’s not sure she wants to walk. The nurses were encouraging her and all seemed to be well. Then she started yelling, “Let go of me! Let go of me!” and “Help! Help!” Then other distressed noises come out of her mouth. Then she calmed down and continued walking. Then she decided she wants to go into another patient’s room, so they needed back up nurse support to get her going the right way again. Then she doesn’t want to walk again and threatened to hit the nurses with her cane. More than once! That’s when I decided to get back to the safety of my own room. The halls were too dangerous for me! All I knew is that my end wasn’t going to be due to an old lady with Alzheimer’s and a cane.

That was all just a sneak peak. I will periodically update you on new incidents because I am SURE I have not experienced the last of them. I only have more to look forward to – and more sitcom material. Malene! Start scouting out a production team in Denmark! Stat!

FALL

I’m going on my second month in Camp Summerlin (as my walking buddy Ilene called it.) I am going to be here for at least another month until we find out how my bone marrow reacts to the second round of chemo. Then I get to find out where my treatment and journey will take me. I am on Day 4 of chemo and that is going well. I actually feel almost too good. I feel like I could just take the darn port out of my chest and head on home – resume business as normal. (I actually almost did pull my port out yesterday by accident. It scared the $hit out of me. I’m always pretty careful because it is a needle that goes straight into my chest. I was getting up from my of-so-comfy hospital lounge chair and I stepped on my own darn lines that connect me to the pump.  That gave it a pretty nice tug. I pretty much freaked out but my nurse checked it out and it’s a-ok. Its just a little angled now but no permanent damage and it still works just fine.)

Anyway, back to the topic of conservation, we all know that I can’t just bounce back home. However, I am craving the sense of normalcy, having responsibility and enjoying the weather. I miss the everyday stuff with my kids, cuddling with my dogs and just having control over my life. Its now reached the 70’s outside – beautiful, perfect fall weather for Las Vegas. Its my favorite time of year and I can only see it from inside from my hospital room.

Gru the Bulldog

Gru the Bulldog

And...now Gru is tired.

And…now Gru is tired.

Fall and winter are also my favorite time of year because of all the holidays and traditions that Dave and I have put in place for our kids. Once I had little ones of my own, I found it very important to try and instill holiday traditions into our lives. For example, every year we go and pick our pumpkins at Gilcrease Orchard.  Gilcrease Orchard is great. Its been there forever and is very popular during the Halloween season. You pick your pumpkins off the vine, get all dusty and dirty from hiking through the patch and enjoy homemade apple cider and pumpkin donuts for your effort. Throughout the year they offer seasonal fruit that is all U-Pick. I know this is all normal for my Midwest friends and readers but its sure not the norm for here in Las Vegas!

Pumpkin Patch pic 1

 

The kids had a blast this year but I didn’t get to go. Dave and his dad took the kids. I was bummed because I couldn’t go but so glad we were able to keep up the tradition. I loved seeing the smiles on their faces from all the pictures Dave took. It made me feel like I was right there with them.

 

Pumpkin Patch pic 2

This is certainly a time of patience – something I haven’t always had a lot of. Its often said, but very true – “All things happen for a reason.”

INEVITABLE CHANGE

I’m starting off on a random note. I just saw on the news (because I have so many tv options at 6 pm on a Friday night) that it is National Taco Day and National Vodka Day. Go out and celebrate! I just know that would give me a stomachache.

Its been an interesting day. It started with my oncologist Dr. Wareman (who is awesome and super smart by the way) said I could go outside for a bit! Do you understand what that means to someone who has been inside a hospital for a month? I was excited. Of course, today was the coolest day of the year so far at 70 degrees. I sucked it up and still took advantage of my opportunity to breathe fresh air. Remind you I live in Las Vegas, so we’ve been in the 80’s and 90’s until today. The air and the sun was absolutely perfect.

I’ve made a couple of dear friends that also have AML. They are further along in the treatment process so they have shown me the ropes around here. They are also my walking buddies. We have our walking route around the nurses station and we chat, share stories, complain about side effects and meds and of course gossip. Believe me, there can be as much drama and gossip with the nurses and patients as there is in high school. Well come on! What else do we have to do?? We are called the “walking pack” by many of the nurses and doctors. I like to think of us as the Walking Warriors because you really need a shaved head to join the group.

The Walking Warriors Me, Ilene, & Annette

The Walking Warriors
Me, Ilene, & Annette

Back to the point of inevitable change. One of our Walking Warriors, Ilene, left us today to go to MD Anderson which is in Texas. It is the largest practice of leukemia experts in the world. I was so happy for her to have the chance to go and she was thrilled to be given the opportunity. The bittersweet is that we have all become such good friends and such great support for each other. It was hard to see her go. However, it represents how we are all in transition and sometimes things must make a change for better things to come along.

Treatments and medications are constantly changing. You have to take each day step-by-step. I started my second round of chemo today. Yesterday and today my blood count numbers were great. But, we know with the chemo my body will go through more changes and my numbers will drop. That is to be expected because we are basically trying to change what my body was doing that made me sick.

I know one thing. The only thing that shouldn’t change whether you are in a hospital, going through something at home or work or have the perfect life: Your Positive Attitude. That will ALWAYS get you through ANYTHING.

And this is my positive attitude picture about AML.

And this is my positive attitude picture about AML.

SIMPLY AN UPDATE

You know you’ve been in the hospital for an extended period of time when Ellen is the highlight of your day.  I may not agree with all of her political beliefs but she cracks me up.

Once again, first time in a few days that I have felt like grabbing this computer. Its one side effect after another – which is all to be expected. First I had stomach issues. That has been resolved. Of course I had to get an ultrasound and CT scan just for the tests to not really show anything. Then yesterday I was receiving a unit of platelets (a daily occurance for me) and as soon the transfusion was over, I got incredibly cold and I was shaking violently. My teeth were chattering and I even bit my tongue. This syndrome is called “rigors”.  It occurs if you happen to have some type of reaction to the transfusion. The platelets I was receiving were A- platelets (we call that type-specific because that is my blood type.) Rigors can just happen for some reason. It lasted for about 10-15 minutes and demerol is a medication that stops the shaking. As soon as they put the medicine in my port, I stopped shaking immediately. It was a very weird experience.

As you know, I’ve mentioned more than once being able to go home for a week after my numbers were high enough. Well, that isn’t happening any time soon. Don’t worry! I’m okay with that! I won’t go into the specific details of it all because it gets quite confusing and boring. But the bottom line is, my doctor feels its best that she hits me with another round of chemo. This chemo will be a bit different cocktail of medications than my first round. (There are many dfferent types of chemo.) My oncologist, Dr. Wareman is up-to-date on the most cutting edge leukemia treatment so I trust her completely in her decisions.

So, the moral of the story is, when you have leukemia (or any type of cancer for that matter) you can’t always predict what its going to do. You just have to go with the flow. Its like having a baby – they don’t always come out when you want them to.