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
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.
(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 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.
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!
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
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!
Click here to order your t-shirt!
You’ve read my trials and tribulations of ths sudden prognosis and you’re probably still wondering exactly what is wrong with me. I was in the same boat. I was scared to look at the internet and the doctors are great but its hard to get a full handle on what is really going on in my body. Doctors just had such a sense of urgency to get my chemotherapy treatment and anitibiotics as soon as possible. It was a complete whirlwind.
This is is what I researched: AML stands for Acute Myeloid Leukemia. There are there 3 other types of leukemia and this happens to be the type that I have. According to The Mayo Clinic, AML is a cancer of the blood and the bone marrow. There is a rapid growth of abnormal white blood cells that accumulate within the blood marrow and interferes with the production of normal blood cells. Per the AML Alliance, AML is rare for patients under the age of 40, however it is the most common form of acute leukemia. There are more than 11,900 new cases of AML each year. Symptoms of AML include fatigue, shortness of breath, easy bruising and bleeding and increased risk of infection (all of which I had.) These are all symptoms that I contributed to have the flu or picking up something from the kids. And the bruising? Well I just figured it was from all the moving and upacking of boxes.
I have found many great leukemia support sites that give lots of good information and support and I am sure I will come across many more as do more and more research.
These are just a few that I have found great information from actual patients and survivors.
My mom decided to come visit and checkout my new house just after school started. It was when she realized that things just weren’t right. I spent the first 2 days that she was here with me on the couch throwing up, diarrhea, no energy or appetite. I almost passed out walking Ava to school and that is when my mom insisted that we go to Quick Care. They gave me a liter of fluids and sent me on my way – saying I was deydrated. It helped but not much.
The next morning my mom insisted we go to the hospital, I still wasn’t feeling much better. That was Wed, Sept 4. I haven’t left the hospital since then. I spent the next few days going through a badgery of tests. Anything you can think of: x-rays, CT scans, MRIs, continual blood draws. The blood draws confirmed that I had extremely low white blood cell count and low platelets. (For example, a normal adult should have at least a WBC count of 1000, mine was at 300.) I didn’t sleep for 2 days straight. The bone marrow test (test from HELL) is what confirmed it all – I have Leukemia.
WHAT? LEUKEMIA? I’m only 31 years ago with and 6 and 3 year old.
I haven’t been home since that Wednesday. I will get on my high horse for one minute: be thankful for all that you have in your life, for your loved ones, make sure they know you care because you never know when there’s a day you won’t just be able to go home. I WILL survive – AML is completely treatable but your life can still just change in a heartbeat. Okay enough of that…
I have my husband and my mom living in my house to take care of the kids and keep the kids lives as normal as possible. I FaceTime with them every night and I miss loving squeezing their little bodies. They are hilarious in their bickering and their competitiveness about who has a better school. Some things just don’t change though. I still had to threaten to put Grady in time out (even though I am 2 miles away in a hospital bad. He shaped up!) In three weeks I will get to see them for a whole week. They have been making me pictures and masterpieces so I have a picture board in my room where they all get hung – even the neighbor kids have added to the Art Museum of Get Well Mommy.