Chemo Round 1: Me vs. the Red Devil

Today was my first treatment, and as of now I'm feeling pretty good. I think it will all hit me Friday night and through the weekend. So, I (hopefully) have 24 hours before the bad stuff comes on. Today was pretty easy, I was hooked up to an IV and sat as the Devil tried to take hold. I've been feeling a little dizzy, but other than that, not much else. My mom and my friend Amy came and sat with me the entire 5 hours. Can you believe just 4 weeks ago Amy had her brain surgery and I was sitting with her? Now, she's back to waiting on me. I'm guessing our roles will switch back and forth for the next few months! At least we have each other to fight the tumors so we have named ourselves "Tumor Twins".

After chemo we all went to Super Cuts so Amy and I could get hair cuts. Poor Deborah (the stylist) asked me why I was having such a drastic cut... Chemo... enough said. THEN, Amy goes right after me and the poor lady takes off Amy's hat and sees the massive scar across her head. She gasped at the situation and had to sit a minute. We do create quite a commotion. She refused to cut Amy's hair shorter in the back, because she wanted to make sure there was enough hair for the comb over. God love her!

So, still in good spirits. so the Devil hasn't gotten me yet.

The Lost Boys of Sudan

The title seems random, I know. But, has anyone seen this movie? If so, you might recall some of the Lost Boys ended up in Kansas City. Well, one of my students is from Sudan and she invited me to a Sudanese party on Saturday night. As a rule of thumb I ALWAYS try to attend anything my students invite me to, especially if it is something highlighting their culture. Very rarely do they invite mainstream Americans in, more because they don't think we will like it, rather than because they feel uncomfortable. I have often times been the only "white" person (as they say) at many of these events and Saturday night was no exception. I took a friend of mine who also likes this sort of stuff and when I saw my student she gave us a huge smile. She was so proud that we came.

The party was a nationwide reunion for all of the Lost Boys to come in and reunite. There were hundreds of people there, the men all dressed in suits and the women in beautiful African or mainstream dresses. There was tribal music, tribal dancing, lots of smiles, and lots of hugs. I felt so blessed to be part of something so powerful! Many of the people came up to me and introduced themselves and explained the significance of this reunion to my friend and me. We even got a direct translation from a kind women who explained to us what the speaker was saying, since NOTHING was in English. It went something like this. "The man is blessing the Lost Boys and congratulating them for how far they have come. He reminds the boys how they had to drink each others pee to survive while they were in Sudan. Now he tells the boys they don't drink pee anymore." Although I smile at the translation, the message of survival is powerful. These boys did everything they could to survive, in a time of war. It gives the word survivor a whole new meaning to me. Yes, I will be a survivor as well, but these boys, now men, have my full respect and admiration for what they had to survive through.

Anyhow, it was a great way to spend my Saturday night. I felt like I was right back in Africa again. So, this whole no flying thing is easy when there really is culture all around us. It is everywhere. We just have to be willing to see it.

If you haven't seen the movie, I highly recommend it! Especially since Sudan is just now coming out of war.

If I feel okay this Saturday, my Iranian student invited me to a Persian picnic. I really hope I'm up for it!

Care Calendar Update

Now that I know my plan for Chemotherapy, my friend has updated the care calendar with more dates. I only have 9 more days of freedom before being challenged by the first dose of the red devil! I know that April and May will be a bit more difficult for me since I will still be teaching full time and coaching soccer. The idea of cooking for myself when I am at 100% is difficult in itself, so doing it while undergoing chemo probably won't happen. I have really loved and appreciated everything I have gotten up to now, so it seems almost crazy to put down so many dates for food! :) I feel like everyone in my life has been so amazing with their cards, e-mails, calls, flowers, food, visits, support, etc...

I really love the visits, so I tried to pick times when I know I'll be home so I can say hello and catch up on your lives! The next 5 months for me will consist of a lot of couch and movie time, especially on weekends. If anyone out there needs a break and a good movie, just let me know and come on over! (I'll even let you do my hair:)

To access the calendar just click the pink link at the top of the page and enter the code.

Thanks so much!

Pictures of my first new haircut will come this weekend!

No Airplanes for 6+ Months!

My nurse said it at chemo school, with not even a flinch, "No planes for at least 6 months." Gasp... Even my parents' eyes widened in concern. Not that I have any desire to travel this summer, as I know I won't feel up to it, but the thought of a plane being forbidden.... now that my brain couldn't grasp. This will be my first summer in 37 years that I will not board an airplane for somewhere! Crazy, huh.

The ironic part, as soon as I left chemo school, I went home and packed for my New Orleans trip! And what a trip it was! I had a great time hanging with good friends, eating amazing food, and walking all over the city. We also managed to get our presentation done in the meantime (the whole reason we were flown there in the first place:) Pearson Publishing Company flew my friend Sara and me out to this national ELL conference to present about how we integrate technology into our lessons. Our district ELL coordinator was also there and we ended up having over 100 people in our session, including some bigwig writers and publishers. We got quite the reception after our presentation and were quickly invited to lunch by two of the publishers!  They took us to a fancy cafe where we ordered grilled shrimp and red spiced grits and talked "business".

It all started with a simple question, "Do you like New York?" These guys wanted to fly us to New York, put us up, and talk to us about helping them improve their textbooks. Then they wanted to fly us to Colorado so that we could consult with some other teachers... FLY US.... hmmm, FLY US... Suddenly, in my mind I heard again, "No planes for 6 months...." I let them know I couldn't fly this summer and my hopes were dashed. Until I heard this, "Okay, we like Kansas City. We'll come to you." And we're back....

No, I'm not quitting my day job, and no this isn't full time work or anything. It's just going to be a summer gig, where we'll get some extra cash and maybe some resume points for being published. Whatever it is, or whatever it might turn out to be, it was flattering to get so much attention. Plus, it will give me something to do this summer as I'm going through chemo. Too bad about New York though... Maybe we'll get to go in the future, if they like what we come up with!

Anyhow, I believe with all of my heart, when one door closes another one opens. I knew cancer would keep me homebound for a while, again the first time I have been homebound in my life. But, who knew an amazing opportunity would be just around the corner. I guess that's why I try not to get too upset when doors close around me!

Port, check!

I checked into the hospital at 5:15 this snowy morning. Getting the port was easy, as far as surgery goes. I asked the doctors not to put me completely out, as going completely under is hard for me to come out of... and I wanted to make my 2:00 soccer practice. I know everyone, including my family and my doctors, thinks I'm crazy for not canceling practice, so I don't blame people if they have similar thoughts. But, let's be honest, I'm an outside gal. Being outside is something I need to maintain my sanity. Put me on a mountain, or under the ocean, or on the lake, and I'm happy. I'm just as happy taking my dog for a walk, or hanging out on the soccer field. I guess being outside keeps me from ever feeling sorry for myself. So, yes, I had surgery and then I went to soccer with one working arm and a smile. All the doctors told me not to go, and to rest today. But then, one kind soul step toward me and whispered in my ear, "you can go, but you CAN'T play!" She must be an outside gal too, because she made my day. My parents must get it as well, because they didn't try and stop me. Instead, they sat quietly and offered to drive me to the field, since I wasn't released to drive today. My dad drove me to Staley (25 minutes), sat in the car while I ran practice (1 hr 35 min.), waited for the last freshman girl to be picked up (another 15 minutes), and then drove me back home. Now, that's support! Thanks for understanding mom and dad...

I left the hospital at about 9:45, so the whole thing was 4ish hours, not just the surgery. The surgery itself was about 45 minutes. I was in and out of sleep the whole time, and was actually trying to figure out what they were doing. I'm not a panic type of person, so I found it all interesting. The only thing I really remember though is that my nose really itched, and the nurse was kind enough to itch it for me... twice. So, getting a port put in = itchy nose.

I felt pretty good after the surgery so I was able to go up to the ICU to visit my friend Erin and her sister Kyrie. Erin is stable, but still critical. Her numbers are improving, so that's great news! I just can't wait until she is back up and talking or writing on her white board again! I miss her!

Now, my arm and neck are a little stiff, but nothing like the pain the girls have given me in the past, so I'm not sweating this too much. Tomorrow it's off to 'chemo school"at 8:30 , soccer practice from 11:00-1:00, and then a follow up appointment with my plastic surgeon at 2:30. But the best part of tomorrow will be packing for my trip to New Orleans on Wednesday! I get to get out of my cancer world for 3 nights to go to present at a national conference for ELL. Since it is work related, it's all paid for! Because my money is currently being used for doctors' bills, this is a welcomed trip that I am really looking forward to!

Quick Update

I just wanted to give a quick update after my doctors appointment. Good news- my liver is clear! The doctor said it was a cyst, absolutely not cancer. The bad news, my blood work was off again today. They made me draw blood twice because it didn't look right. I had a really low hemoglobin count, so the doctors had me sit in the waiting area until they figured out what to do after the second test came back the same as the first. I guess they didn't find out what to do because eventually they just sent me home! :)  My immediate future could contain more blood tests!

My tumor also came back 7% HER2, which means they will treat me for HER2 along with my original treatment plan. For those of you REALLY interested I was told I'd have the ACT treatments (three chemos, or a chemo cocktail), plus a full year of shots for the HER2 part, plus 5 years of meds after. I warn you not to google the side effects of ACT, as the "red devil" does not sound appealing. But, my nurse told me, "My people don't get sick! Just listen to me, take all the medicine I give you (6 other prescriptions of pills along with everything else) and you'll be just fine." I believe her, and I WILL listen harder than I have ever listened before. With her on my side, I feel good.

My first treatment of ACT will begin on March 31st. It will be at least 20 weeks long. My first 4 treatments are every two weeks. After that, I will have Taxol every week for 12 weeks. I should be finishing right as school is starting, so I have my summer plans already set in stone! What about you?

Back to Work

Yesterday was my first day back with students and it has been great to be back, although a bit tiring. I kinda snuck back into work, so nobody was really expecting me, not even the kids. So when they saw me, they were really sweet, even though they couldn't understand why I still had hair. We reviewed the surgery idea again and I did let the kids know that they were correct with the "medal balls" theory, as the girls are heavy and tight. I'm hoping they loosen up a bit and give me a break one of these days! 

For those of you that don't know, I teach high school ELL. Usually the next question I get is, "What does that mean?" In my situation it means that I teach students from all over the world with different cultural and linguistic backgrounds. Basically my students speak a language other than English at home. I have kids from Africa, Latin America, Asia, the Caribbean, and the Middle East. ALL of them speak English pretty well, but they don't read or write it as well as a native English speaker would. I teach them an English class, but I also push in and help with a Biology class and an Algebra I class. But really, the other teacher I work with and I help with all of the high school subject areas. It’s a very rewarding job and I am very close to my students. A handful of my kids I have had since they were in 7^th grade, as I used to teach in the middle school. So, as you can imagine, we know each other very well. Now I’m going to get to the point of my blog. One of the kids got a huge Snoopy card for me while I was gone and had everyone sign it. Keeping in mind the backgrounds of my students, I wanted to share a few funny yet touching messages they came up with. (Written exactly as they have it)

“Hope you get will soon!”

“Ms. Macintosh you are the best teacher even after I was rude. You are like a School Mom. I care about you so much If something happened to you I would cry.”

“…I am sorry for last semester for been a distraction in class and not for doing my work. I learned that if you just stay in one place you get run over if you don’t keep on going…”

“…this is your girl (name). I hope you get better soon because I miss you. And I raised my grade up in Spanish like you told me to. Take your time to heal because your sub is cute…”

“Keepin it short and sweet…get better gurll! Come back bc we miss you…yea”

“…I’m so thankful for having a teacher like you. We love you very much. I’m going to do my best in school. And having this teacher is making it better. ;) But not having a phone is killing me but oh well. I miss you get better.”

I love their honesty! They literally write like they speak, but don’t worry, their papers for class are much cleaner! J

So, the last bell is about to ring and I’ll be off to soccer practice. Then I’ll head home to a nice couch and to good friends and family coming to visit.

As for the cancer thing, no test results as of yet. I’m guessing I’ll find out all I’ll need to know this Thursday at my appointments…

Have a great day!

Still Collecting Information

So, who would have thought the one with the brain tumor and the 7 hr surgery on TUESDAY, would be the best off! She has already been released from the hospital and heading home. I'm so impressed with the Brain!

Erin is still in ICU, but fighting strong.

I had a few tests today and got some good news and 'bad' news. The reason I put bad into quotation marks is that it might not necessarily be bad, but instead turn out to be just another test. My pet scan picked up a spot in/on my liver. It could be a cyst, but the doctors just want to be sure. SO, guess what I get to do tomorrow???? That's right folks, back to the titanic for another round in the MRI machine. When I first heard the news I was really nervous because last week the blood work for my liver came back way off the charts. The doctors made me go back to KU Med to re-test on Monday. So, hearing there was something in my liver, really threw me for a loop. Well, we can all rest a little easier now, as the new blood work from Monday came back normal. Whew! Turns out, if you take copious amounts of pain killers and muscle relaxers when you have hardly ever taken anything in your life, your blood work gets skewed.  :)

On the good side, my heart is just fine. I had what is called a MUGA scan, which determines if my heart is heathy enough to take on the amounts of Chemotherapy I'll need. It shows the overall cardiac function by measuring the proportion of blood released from the left ventricle with each heart beat. The doctor said 50%-65% is normal, with anything below 50% very dangerous. I measured a health 60% even. Now, as I go through Chemo they will repeat this test to make sure my heart function doesn't drop. As long as I stay above 50% I'll be fine. If I ever drop below that (not at all likely), I'd have to stop treatments and try something else. I tell ya, there's a lot to this cancer thing...

I didn't get to find out about my treatments yet because my tumor is still being tested in pathology. So, I have to wait another week until I know my final diagnoses (exact type of cancer I have) and treatment schedule. I do know I have to have my port surgically put in March 14th at KU Med. How is it that this surgery is 4 hours while my bi-lateral mastectomy was half that? They will place the port in my chest on the right side. Later the nurses will use the port instead of the veins to hook me up to chemo and draw labs. It saves the veins.

That's all for now. Back to the waiting game and the doctor's appointments. When I say doctors appointments, I REALLY mean it. As of now I have 16 different appointments scheduled for the month of March!!! And, we're still scheduling. Luckily though, some of them fall on the same day! I'll write a blog sometime just about the team of doctors I have! I could field a football team!

Update

It has been a LONG few days, but things are slowly starting to look up a bit. On Monday I had my bone scan and it looks upon first glance that my bones are clear! YIPEE! Of course, they have to be sent to "the person upstairs" to really look at them, but everyone seemed really confident. The worst part of the bone scan was having to drink two huge bottle of what they named "Creamy Vanilla Smoothie". I knew it would be bad when three people apologized when they handed them to me, and everyone in the waiting room from nuclear medicine cringed and apologized. Well, it ain't no smoothie! It took me 35 minutes to drink them both down and I was forcing myself. It was easier to eat beetles, grasshoppers, and overgrown maggots off the bug carts in Thailand than it was to stomach this stuff. But, alas, I finished and the results turned out okay! I also had a pet scan, which is when they injected some clear liquid into my veins and took pictures of all my internal organs to make sure they were tumor free. The nurse said it would "make me very hot and feel like I was peeing my pants". She was right. I should find out those results in a few days.

I also had a follow up with my plastic surgeon and my breast surgeon today. Both were extremely pleased with my progress and how the new "girls" looked. When my breast surgeon saw them, she raised her hands straight up in the air and gave a delighted shout. "They look beautiful!" I haven't ever had a reaction like that to my boobs, too bad it was from a surgeon... or in this case, maybe not!  I will demand this reaction from here on out from whomever may see the "girls"!

On the other side of my life, Amy had her surgery today. I went with her family to check her in this morning at 8:30, and got home tonight around 7:30. The surgery itself was about 6-7 hours. It went well and most of the tumor was removed. They had to leave some behind in order not to hurt Amy in any way, impair her vision, movement, etc. She is now in the ICU resting peacefully. She did manage to open one eye when I went in and say, "thanks for coming". My response, "ummm, sure!" Her mom and dad are with her tonight and it really brings into perspective how my parents must have been feeling this whole time. I gotta say, it is easier to be on the patient side! I knew I could kick some serious cancer butt. But, the waiting and the worrying on the other side, now that's hard!

The even crazier thing about all this, if anyone can believe this. I have another wonderfully close friend that I worked with at New Mark in the pulmonary ICU fighting a rare lung disease. She is literally down the hall from the ICU where Amy is. I spent today between the waiting room and Erin's room. Erin is fighting hard, and has the same spunk and love of life as Amy and I do. So, I guess the saying that things happen in threes really is true. That just means the rest of you can all rest easy! Tomorrow I will jump between rooms to visit these two people I love, as they have both been there for me! We will survive this together by supporting each other and from all of the love and support from every one of you out there hoping and praying for us. We will win! When Erin first saw me last week, she opened one eye, got out her white board and wrote, "huh, you're supposed to look worse that me!" I agreed and let her know she would be up in a flash.

I am recovering, but much of my recovering is happening in the hospital. They have really nice chairs in the ICU waiting room. Who needs the couch.