SEPTEMBER 30, 2008

Round 8

Well, today starts round 8 of chemo. While I am still excited about being on Round 8 of 12, I don't think the anxiety and anticipation of chemo gets any less over time. For me, it seems that the uncertainty of each round (how will it affect me, will I get the fever issue again, will I be sick, will I have ANY energy this round) gets worse each time. I don't know that anything will help make this easier. I don't think it's supposed to get easier. I guess this just reminds me each time that I don't have control over this disease, just over how I handle it. And that, ladies and gentlemen, isn't easy for me to take. But, I understand it, and I accept it (sort of).

So, keep me in your thoughts. Send good wishes my way - anti-fever, anti-nausea, anti-cancer wishes. It's going to be a rough three days, but then, after three days, it's all over for two weeks. Isn't that the power of positive thinking?!?!

Comments:

Amanda: said...

Good luck! Hoping it's a breeze this time around :)

September 30, 2008 at 6:43 PM

SEPTEMBER 28, 2008

GREAT Drs Appt

I went to see Dr O (my oncologist)this week, for a check up and update on status, etc. We got some really good news! First, my blood work all looks REALLY good. I hope that means that the Neulasta shot is working! And, my CEA counts (tumor markers) are really low, which is another good sign. Again, this SHOULD mean that the cancer is having it's ass royally kicked by yours truly, and that I am winning this battle.

The other REALLY good thing that I found out is that I do not have to repeat the two missed 5-FU treatments (from the week I ended up in the hospital and the treatment after), assuming that I don't miss any more days of it. (Fingers and toes crossed here!) That means that, if my counts are right, my last chemotherapy treatment will be the week of Thanksgiving. ARE YOU KIDDING ME?!?!?! Isn't that awesome? I am so excited. I am trying to be cautiously optimistic, b/c I know that this could change with any of the treatments, or if I get sick, etc. So, while I am happy to have this day on the horizon, I am also trying to be realistic.

We also used the word *remission* for the first time during this appointment. I asked her long-term what the plans are. She said that we would finish chemo, get a PET scan (to make sure there isn't anything else hanging out in my body), and once I get that cleared, get the port out. And, when I asked her if I am considered to be in remission when chemo is done, she smiled and said yes. OMG! What a feeling that was, to know that this point is in the foreseeable future. I am completely and totally ecstatic. Again, cautiously. But, still....

So, it was a great appointment. There is some confusion on exactly what round number I am on. I think what happened is that one of the chemo nurses assumed that Dr O would want me to make up the two missed 5-FU infusions, and modified my round number according to that assumption. But, since I don't (at this point) have to worry about that, I am going into this week as Round 8, which means that I will be working on being 3/4 done with chemo.

Unreal....isn't that GREAT news?!?!

My TWC presentation

I met Paula Hardison, the Executive Director of The Wellness Community here in Phoenix, about a month ago. I was at TWC for my weeky meeting, and had the chance to speak with her briefly. She was a wonderul person, kind, caring, and passionate about TWC and its mission. While we were talking, she asked me if I would come to the LEadership Council meeting and make a short 5-7 minute speech about my experience with TWC and its imact on my life. I assumed that this was a monthly meeting, about 5-10 people, etc. Nothing too big.

Nope. This week was the presentation, and it was quite the thing. I got to TWC early (I headed there after my drs appt) and was excited to see that the cooking demonstration they put on every Thursday was still happening, so I was able to get samples of the foods cooked. Yum! I met Kevin, the chef, and got a copy of his cancer cookbook, which I can't wait to start using. More on that in another post.

Anywhoo, after feasting on the tofu scrambled eggs, multi-colored salad (fresh beans, peppers, basil, tomatoes, and oranges - yum!), and rice ice cream and berry applesauce (to die for!), it was time to head to the meeting. I am not sure how people get involved with the Leadership Council or what it takes to become a member of this council, but the people that I met and was introduced to have all been touched personally by cancer. They were great people, and it was a pleasure talking with them.

Once the rounds of introductions were completed, Paula asked me to come up front. I had written some information down, lest I forget what I meant to say, but I really didn't need to look at it. I reviewed my story, and then told them how wonderful TWC has been in helping me with my recovery and treatment. I was able to share with them how TWC allows me to meet with other people who can sympathize with my issues, b/c they have been there or are there right now. And, I was able to share with them how TWC has helped my family by helping me. It was an honor to be able to speak with them, and the ovation I got helped the ego.

I just wanted to share this with you, and remind you that if you are personally dealing with cancer, either as a patient or as a caregiver, please consider going to your local Wellness Community. There is no obligation, no pressure, and no expectations. But, you will get support and assistance for dealing with your situation. And, you might make a new friend or two. Always a good thing in my book. :-)

Long term planning

Levi and I have been having discussions about what happens after chemo is done. One of the things that we have decided on it to modify our eating habits and to incorporate excercise more into out lives. This will mainly consist of cutting out red meat and eating a more plant-based diet, and planning more family walks, hikes, etc.

To this measure, I just bought the book, Anti-Cancer, from Costco. Dad bought "The Owner's Guide to You", another book, and said that this would be a great resource. I was just given a cookbook from the chef that does cooking classes at TWC, Kevin (book is called The Survivor's Handbook - eating right for cancer survival), and one of my managers is sending me a copy of a cookbook that he and his family use all the time (thanks again, Troy!).

If you have any recommendations on cookbooks, ideas on how to get more excercise into our busy lives, or how to get protein without eating meat, please, send them to me. This is going to be a change for us, but we are welcoming it with open arms. Anything we can do to try to avoid hearing the sentence "You have cancer" again is what we want to do. I want to know that I have done everything I can to try to give my body a fighting chance against any other rogue cancers that try to get started. Additionally, this will give Levi and the kids a head start against anything they might have to fight in the future.

What a life. I can't believe I am already starting to think about life after cancer. What a blessing. I didn't think I would make it this far. There were definitely times when I doubted my ability to make it to the end of chemo - now, I can start to think about life AFTER chemo. It's truly a change. And, exciting.

SEPTEMBER 21, 2008

The Wellness Community Zoo Event

Yesterday, Dad and I took the kids to The Wellness Community for a Phoenix Zoo Event. The Zoo-mobile came to TWC, and had a presentation with some animals. Let's see - what did they have there - a salamander, a king snake, a hedgehog, a millipede, and a raptor. It was awesome - I have some picture below. I was worried about the kids and how they would react, but they both seemed to really enjoy it. They even touched both the snake and the millipede, which I thought was pretty impressive.

Here are the pictures:

This is Dad and the kids watching the animals.

Kevin touching the king snake. This is a big deal for him b/c when he was about a year old, we saw a snake in the pet store, and he was, shall we say, less than enthusiastic about it.

Julia and the king snake.

This is the raptor that they had there. It was so cool - a huge bird that was rescued from the wild, and now spends its time making the rounds as the star of the show. 

Comments:

 wyldirsh123 said...

I just saw your new picture in the "I Will Win" t-shirt. I must say Michelle, you look great! After all you've been through, it's amazing. I read the blog every week to keep up on your progress. You're very inspiring. Keep up the good work, you're doing great! Mary "Murph"

September 22, 2008 at 6:37 AM

 Amanda: said...

I LOVE that pic of you in your shirt! What an inspiration you are, without even trying!!!

September 22, 2008 at 8:11 PM

SEPTEMBER 18, 2008

This round went....

...well. I mean, comparatively speaking, this round went well. I am exhausted and nauseous. I think those are my biggest two complaints this time 'round. Other than that, I am feeling okay. I was able to complete the entire round of chemo (woo!), and I consider that a huge success. I am still pretty tired today (the pump came out and I had my shot - ick), but I made it through. That's the biggest thing to me. The shot is causing some aching in my bones, but that's a normal side effect. 

What else? I think that's it. I joined Facebook recently. I didn't think I would ever do that, but now I am hooked. Darnit. Oh well - just another way to waste time. How am I going to keep up with all of this when I go back to school???

Comments:

Amanda: said...

I'm glad that your round was relatively easy! The occasional break makes the rest seem a little more bearable, I think.

You'll have fun with Facebook - I had to limit myself on it time-wise, lol. I'd never get anything else done if I didn't!!!

September 19, 2008 at 9:03 AM

 Ally said...

Hey Girl!! I am so happy to hear things are going well, considering! many hugs and prayers..you sounds strong and determined!!!
I have a page on Myspace...hope you'll create a profile and join there too! my url is www.myspace.com/allycpa
hugs! and stay strong! love ya!

September 28, 2008 at 8:56 AM

SEPTEMBER 14, 2008

Drs Appt Update

On Wednesday, I had a follow up with my dr about the fever, chills, etc. that I had after my previous round of chemo. Basically, all of the tests came back negative, meaning that I am not fighting a blood infection, pneumonia, or other exotic ailment. It looks like I am simply experiencing some of the lesser known side effects of the chemo drug, including high fever, chills, and tightening in the chest. Fun.

Bill gave us a couple of options. We can move forward with the current chemo regimen, and try to lessen the side effects with other drugs (Tylenol at first, and if that doesn't work, some RX drugs). We can also switch to another chemo drug, which is slightly less effective, but would change up the side effects (instead of fever, severe diarrhea - woo!). The problem with this is that if we switch drugs and I have a recurrence of the cancer, we have eliminated that chemo as a choice in combating the recurrence. Needless to say, we chose to try to push through the current chemo, and try to stave off the side effects. So, I start chemo again on Tuesday, and will begin taking Tylenol every 4-6 hours for at least two days, in an effort to try to contain the fever.

On that note, I am anxious about chemo on Tuesday, but confident that I can make it through. While I post about how bad I feel during chemo, it really isn't as bad as it could be. (Remember that I am a glass-half-full kind of person.) In truth, I feel crappy for about 4-6 days. After that, I start to feel human again, and eventually, I start to feel good (comparatively speaking). I am even able to return to work on the following Monday (by the way, I got approval to work more hours - more on that in a moment). So, compared to others going through more rigorous forms of chemo, I am really doing well. I look at others in the oncologists office, and see that they are having to live with ostomy bags, oxygen tanks, walkers, etc., and it makes me truly grateful for what I have.

Regarding work - I was given a note stating that I can return to work, up to 8 hours as tolerated, part-time (to accommodate my chemo schedule). Well, I upped my hours this Thursday and Friday to 6 hours, and it kicked my butt. So, while the mind would like to return to work full-time, my body is putting the kabash on that. I will be maintaining a 5-6 hour daily schedule until I feel ready to push it beyond that. As you all have warned me, I am trying to make sure that I read the signs my body is giving me, and not push myself into another hospital visit. See, I do read comments and listen to you! :-)

Other than that, things are going well. Levi is still in FL, and doing well - he's bored on the weekends, but hopefully he will be home soon. The kids are great - Kevin is feeling much better, thank you. And, Julia is having a blast at school. Overall, things are good. I am feeling optimistic about this upcoming round of chemo. Bill said that I won't have to repeat the two days of 5-FU that I missed from the last two round of chemo, but I have a feeling Dr. O is going to make me re-do those. If Bill's scenario pans out, I will be starting round 7 this week, and that means that I am on the downhill slide (7/12 rounds!!!). However, if Dr. O's scenario pans out, I am starting round 6. Either way, I am halfway done. And, that is such a milestone for me.

Don't get me wrong - one thing that the past month has taught me is to throw out all expectations of this treatments - things aren't going to go the way I want them to. I can't base my life on a prematurely set end-chemo date. I have to take each treatment one day at a time. So, while I know that I am halfway done with this particular kind of chemo, I have accepted (or at least understand) that I might have to either continue this chemo or start a new round, if things don't go the way I would like them to once I am done in December with this treatment plan. And, while I won't be impressed if I have to continue or start a new chemo, I also know that this is out of my hands, and I have to "roll with the punches", as they say.

Sigh - I just wish this was all over. Soon enough, right?

Comments:

Tom H said...

I'm really that you're starting chemo back up again. It sucks that you go back to feeling crappy, but the sooner it's over, the better, eh?

While it sucks now, just think of how it look from the other side. You're so close to getting to feel that immense amount of relief when they say "this is the last one!".

Also, at least winter is coming up. While your cold sensitivity sucks, at least everyone else will want the heat on, too ;)

September 15, 2008 at 6:20 AM

 Amanda: said...

Hang in there - just keep plugging away and things will be back to "normal" soon (the new normal, of course)!!

Good luck with your event! That's how I feel about the Relay for Life - I'm so passionate about raising awareness.

September 15, 2008 at 9:07 AM

Later:

Join my team!!!

I finally registered for my Undy 5000 team. Of course, the team is named "Michelle Will Win!!!" Really, could there be any other name? As I have said before, the walk/run is on November 15th here in Phoenix. You can find more information on the Colon Cancer Alliance website, www.ccalliance.org, or directly through the Undy 5000 at www.undy5000.org. 

If you haven't already received an email from me, please comment on this blog or email me with your email address, and I will shoot off your very own invitation to join my team. You can donate several ways - online, through snail mail, by joining the team and walking with me (be forewarned - you might have to help push my wheelchair!), etc. I am not asking for a lot - can you spare $5? That's awesome!!! 

This is a wonderful cause, and I hope that you make the decision to support me in it. My goal is $1000. I know it's a lofty goal and I might not make it - but, everything I can bring in to help raise awareness for this disease is going to help. I never expected to have to deal with this cancer. I never expected that I would be facing months of chemotherapy, and illness, and a lifestyle change. Who knows what life is going to throw at you - isn't it worth a few dollars to help make sure no one else has to go through what I am going through? 

Please, join me in this fight. You have asked me in the past what you can do to help - this is it.

SEPTEMBER 9, 2008

My sick baby...

There are times like tonight when I absolutely, no question about it, hate cancer. I hate what it has done to me. I detest the word, I loathe the disease, and I lash out against it. 

I had a good day - worked, got a lot accomplished, had an appointment with my new primary care physician, was pleased with that. Got to daycare, was on the phone with Levi, and Stacey called out from the door, "Kevin just threw up!" Oh my goodness. So, I immediately hang up the phone and go running in the house - yup. He threw up. All over himself. It was, as they say in first grade, "so much gross!"

So, I had to call Dad, b/c my first reaction was that I needed to help my baby, but I couldn't. I couldn't be around the germs and exposed to the virus or whatever, b/c I can't afford to get sick. Well, sick-er. Dad (the angel that he is) came and got Kevin. I tried to get the baby changed, but again, I was nervous about getting sick.

Is there anything as frustrating as wanting to help your child, and not being able to? I don't think so. As humiliating and frustrating as it is to have my mom wash my hair or help me get dressed during chemo week, I can directly attribute that to my illness and the reaction from the chemo. Easy - I have issues, here's the reason. End of story.

But, oh, to not be able to hold him, or comfort him, or help him - I think my heart broke a hundred times tonight. To hear him calling for me - Mommy, Mommy. And, to have to give him over to my dad for care. I feel so good during the off-chemo weeks. I work, I try to maintain a sense of "normal" life, and I want desperately to do everything I can. But, this was like a slap in the face. Here, Michelle, your child is sick. All your baby wants is his Mommy, but you can't be that person tonight. You can't be Michelle, mommy extraordinaire. You can't hold him, hug him, cuddle him. Instead, you have to try to get your two year old to understand that Mommy can't help him b/c of chemo and cancer. 

I don't think heartbroken quite describes how I feel right now - it seems to simplistic and general a word. I am so grateful to my father for taking over and helping us out. He has taken care of Kevin all night, and I don't know if I can express how much it means to me to have him here, and to have him be willing to take this on. I don't want this to come across as angry at anyone. But, I am just, well, heartbroken that I can't be there for my son. My baby boy. He needs his Mommy, but this damn cancer won't allow me to make the choice to take care of him. 

I hate cancer...

Oh - by the way, Julia is fine. So far. Here's hoping.

Comments:

Jennifer Witham Buck / Graceful Expressions said...

Okay that would suck.
I can't imagine that. However...think it about it logically without your emotion attached...
first, Kevin is too young to remember that he had to go to his grandpa (who I am sure spoils him equally just as his mommy and daddy would) instead of you. It is not going to land Kevin in therapy for years on end because of that one little thing. Chill. Kevin would rather have you here years from now healthy and happy rather than God forbid you becoming sick from something that could be traced back to him. You did the smart and right thing and thought of your child first. You have to take care of you in order to take care of your family.
Hang in there, we love you.
PS - Thanks for your support when I was in the hospital, everytime I got a needle prick/blood/iv I thought of you! I am home and trying to rest now...

September 10, 2008 at 5:55 AM

 Amanda: said...

Oh Michelle - I've been there! If I was sick, Joshua could be no where near me. If I even felt like there an itty bitty chance I MIGHT be coming down with something, I couldn't be at the hospital. Not only because of Josh, but also because ALL THE KIDS there had suppressed immune systems. It was SO hard.

Thankfully, as Jen said, he won't remember it and you don't have to worry about him ever feeling guilty for "getting you sick too", But, I know that logic doesn't really help the emotions. Sending hugs your way. Hang in there.

September 10, 2008 at 8:03 AM

SEPTEMBER 6, 2008

Did you watch it?

So, did you watch the Stand Up 2 Cancer show last night? If you didn't, shame on you. It was well worth it. As a cancer patient (and eventually, survivor), I was so moved by this display of generosity. If you didn't watch it, I implore you to please go to their website and consider donating. I donated $20 - that's about all I could give, but I know that the money is all going to research that will, with God's will, allow our children to live in a cancer-free world. To me, that's worth it.

I think the most moving part for me was the stories of everyone that is going through it. If you read my previous post, you can see that I am struggling, emotionally, with everything. It's a hard battle that needs to be fought, and sometimes, you feel like it isn't worth it. Like maybe you should just give up. I tell you what - I needed to watch that show last night. I couldn't pull myself away. I needed the boost to remember that I am not the only one going through this. That I am not the only one waging this war. And, to remember that there are people out there fighting this battle just as much as I am.

Listen to the music. The song called "Just Stand Up", performed by a number of the top performing female singers of today, was wonderful. It was inspiring to see these artists, spanning every genre of music today, get together to raise money for this wonderful cause. You can download this tune at iTunes, I believe. Then, at the end of the show, Melissa Etheridge (and friends) sang this amazing song that I am hoping I can download. It was all about power, and strength, and fighting with your heart even through you are too tired to fight. It was such an uplifting song, and as I was sitting on my bed, tears streaming down my face, I knew that I needed to hear those words at that time, b/c I was starting to feel like I didn't have the strength to go on. But, I do. My heart does.

If you watched this show, I hope that you enjoyed it. I hope, selfishly, that you thought of me, and said a prayer not only for me, but for the thousands of people that are fighting this horrific battle. The statistics are grim - 1 out of every 2 men, and 1 out of every 3 women will be diagnosed with cancer. 1500 people each day die from cancer. (The stat that stuck with me - that means every 2 days, more people die from cancer than all of those that died in the World Trade Center disaster on 9/11. No less horrible, certainly, but definitely worth noting...) This means that, at some point in your life, you will be affected by cancer. I already have been. I know my friends and family that are reading this have been. If you came across my blog "by accident" or via a search engine, thanks for reading. I hope that you never have to go through what I am going through.

But, to make sure that future generations don't have to go through the agony of either dealing with cancer themselves, or the horror of watching someone they love go through it, consider donating. Every single dollar helps. And, every single dollar goes to research. The money isn't doled out to administrative fees, like some of the walks and runs do. All of this money goes to research. And, thus, to the cure. As they said last night, let's make cancer history.

Now, I just need to figure out where I can get one of those "In the fight" tee shirts that they wore last night. I wish I could wear the "Survivor" once, but that day is soon coming. If you find that tee shirt, please send me the link. I want one.

Comments:

Ashley said...

Hi! I came across your page by accident while looking for what song Melissa Ethridge sang at the end of the show last night. I saw where you were looking for it as well. Any luck? If so, please let me know. I wish you all the best in your battle against cancer.

September 6, 2008 at 7:03 PM

 Simply Exquisite said...

I watched it and it really moved me and I just knew you would be watching it too :). I thought of you and prayed for you the whole time.
I love you, Michelle and you will be this and stand up to cancer!

September 7, 2008 at 12:40 PM

 Michele said...

Hi Michele,
I read your comment about one day being a survivor and being able to wear a survivor shirt and I just want you to know that YOU ARE A SURVIVOR IN EVERY SENSE OF THE WORD!
I work for a chapter of NSC in Albany, NY, and have known your mom for years. But I am also a volunteer and Event Chair for the American Cancer Society's Relay for Life. By ACS standards, you are considered a SURVIVOR from the day you hear "you have cancer" because that's just what you're doing ... surviving every day! So go ahead and order that shirt and wear it with pride! You've earned it.
Good luck on your road to remission. We'll be rooting for you here in NY!

October 2, 2008 at 12:20 PM

Later:

Melissa Etheridge - lyrics from last night's performance

These are the lyrics to the song Melissa Etheridge performed on last night's "Stand Up 2 Cancer" telethon. It really moved me, and I am dying to get a copy of this song. Anyone out there have it, and can you please tell me where to get it?

*****************************************************************

Copied from

http://www.melissaetheridge.com/home/meNews.php#ff808081181982ab011c2566816f001b.

Melissa is doing a special version of "I Run For Life" called "I Stand For Life." Performing with her will be Jennifer Nettles of Sugarland, Jason Mraz, Bebe Winans, Shelby Lynne, and others.

The "I Stand For Life" special lyrics are:

It's been years since they told her about it
The darkness her body possessed
And the scars are still there in the mirror
Everyday that she gets herself dressed
Though the pain is miles and miles behind her
And the fear is now a docile beast
If you ask her why she is still standing
She'll tell you it makes her complete

I stand for hope
I stand to feel
I stand for the truth
For all that is real
I stand for your father, your brother, your wife
I stand for you and me, my friend
I stand for life

It's a blur since they told me about it
How the darkness had taken its toll
And they cut into my skin and they cut into my body
But they will never get a piece of my soul
And now I'm still learning the lesson
To awake when I hear the call
And if you ask me why I am still standing
I'll tell you I stand for us all

(chorus)

And someday if they tell you about it
If the darkness knocks on your door
Remember us, remember me
We will be standing as we have before
standing for answers
standing for more

(chorus)

Comments:

Amanda: said...

Michelle - the video of our news story is up. I posted the link on my blog.

Loved Melissa's song at the end of SU2C... Thought it was great!!!

September 7, 2008 at 10:56 AM

 Phil, Sharon & Rachael said...

I wish I knew about the broadcast bec I didn't watch. I do know the song from the commercials though and those ads always moved me back then when I didn't know a soul (directly) who had cancer - I think the ads launched 2 years ago bec I haven't seen them in a while and they used to play all the time when I was on maternity. Hormones and all back then, it would make me tear up, but I know those will simply make me bawl now so hmm... maybe it was a good thing I missed the broadcast :)

September 8, 2008 at 12:51 PM

SEPTEMBER 5, 2008

Friday update

Well, my normal this week has consisted of sleeping. That's about it. Sleeping, and trying to figure out what I might be able to eat that won't upset the inner working of my belly. Because eating when you want to, and are hungry, is awesome. When you eat b/c you HAVE to, well, it isn't nearly so much fun. 

I would like to report that I bounced right back, and am feeling super-duper, but I would be lying to you, and that isn't nice. So, I will be honest with you all - I feel like crap. I am exhausted all the time - I am taking at least an 1 1/2 hour nap each afternoon, and sleeping through the night (bedtime usually around 9) until the kids are waking me up as they head out the door to daycare with my mom (usually around 7:15am). Even then, it takes me a good 15 minutes to drag my butt up out of bed. 

I think the frustrating thing about this is that I am not a sleeper, in that I am not someone who loves to sleep. Sure, I enjoy the occasionally lazy morning in bed, or climbing into a warm, comfy bed after a long day at work, but I am not someone who needs to sleep all day long. I am usually the first one up, getting the house ready for the day, etc. And, to not be able to do that is infuriating. 

Now, I know what you are thinking - you have to do this. It's for your health. And, I get that. I do. Honestly. But, quite frankly, I am tired of having my life interrupted by this damn cancer. I am sick and tired of being the one that has to change my life, my expectations, my reality b/c of the whims of some cancer that, by the way, had no right to be in my body in the first place. (Can you tell I am a little touchy today?!?!) 

I know that I need to take care of my body. I need to relax and take care of my health. And, I need to do those things so that I can finally get back to being mom, wife, daughter, sister, etc. But, damnit, it's so frustrating to know that my kids are getting used to the fact that Mommy can't take care of them. It's pisses me off in more ways than I think I can express. 

I am not mad at anyone. I am so unbelievably grateful that my parents are here to fill in the gaps, or take over parenting as the case seems to be this week, and I truly don't know what we would do without them here. They have become the parents to my kids this week, especially b/c Levi had to go to FL for work yesterday (for two weeks). It just pisses me off that I can't do what I am supposed to be doing - I am supposed to be mother to my kids. I am supposed to be working on my 5th or 6th class in college. I am supposed to be working 8 hours a day, complaining about the routine that I really do love, and just living life in general. Instead, I am here, fighting to stay awake to spend an hour or so with my kids. I am fighting this unknown beast (in addition to the known cancer monster) and I don't know if I am using the right tools to win this battle. Is the antibiotic working? I don't know. Is the chemo what caused this issue in the first place, and maybe that's what's making me so tired? Maybe my body is just recouping from the chemo reaction? Or maybe it's something altogether different that no one has suggested that I am fighting. 

I spent time on the phone with my aunt in Texas and my brother in England today. Both just wanted to talk, which was awesome. Sometimes, it helps to have that happen. I don't know why I am being so bitchy right now. I think part of it is that it's almost 6pm, dinner time. It's a Friday, and I should be out to dinner with my family. I should be grocery shopping, or making a nice dinner to celebrate the weekend. I should be spending time with my kids, enjoying them. And, I can't. Because I don't even have the energy to really play with them. Can you imagine how hard that is? 

The good news from today - my wonderful, dear, amazing friend Sharon had a cleaning company come today and do a thorough cleaning of the house. It was wonderful. They cleaned the showers, bathtubs, toilets, stove, microwave, floors, blinds, ceiling fans - everything! Everything is all clean and shiny and wow - it makes a huge difference for me knowing that I don't need to try to spend time cleaning the house this weekend. It's exhausting to try to do it, even when I go one room per day. I want so badly to try to maintain some sense of normalcy, and some days, if I can clean my bathroom, I feel that I have obtained that. But, it was REALLY nice to have someone do that for me. Now I have time to blog about how bitchy I am feeling, how angry I am becoming, and how this fight hasn't left me. 

REMEMBER - STAND UP 2 CANCER IS ON TONIGHT. WILL YOU WATCH, AND MAKE A DIFFERENCE?!?!?!

Comments:

Amanda: said...

Gosh I wish you were having an easier time with this. Even now, over 4 years later, I still get SO mad at the way cancer "ruins" everything. I know you know what I mean.

Let me wrack my brain - there has to be something that helped Joshua that might help you.

We're trying to get a copy of the video from the news story, I'll post it if I get it and let you know.

September 5, 2008 at 7:19 PM

 Melanie said...

Hey Michelle.... just thought that I would let you know that my vets office also recommended Press-n-Seal for keeping my dog's incision clean. It's some heavy duty stuff! Yea! LOL!

Hope you start feeling better this weekend... always thinking of ya! Love ya! and let me know how the new NKOTB cd is!

September 5, 2008 at 8:08 PM

 Phil, Sharon & Rachael said...

Ooh, I'm so glad the cleaning company did a good job. I always love the feeling of a nice clean house after our's leaves and if you think about how much your time is worth, it really isn't too much to pay! I also saw about the maid service you found for folks undergoing chemo - what a fantastic service!! I'm going to send out an email to everyone to look into that while you're still in chemo and then consider the this maid service afterwards (bec ONE day you will be DONE!! :)) if they are interested :)

September 8, 2008 at 12:48 PM

SEPTEMBER 4, 2008

Well, this wasn't what I expected...

So, to say that I didn't expect to have another hellacious round of chemo would be an understatement. I had it in my head that this would be a piece of cake, compared to the last round,. However, once again, I was forced to cut chemo short due to fever and various other symptoms. The upside? I didn't get admitted to the hospital. The downside...well, isn't this whole thing a "downside?"

Tuesday, Dad and I headed into chemo around noon, after I spent a wonderful morning basically doing nothing, until New Kids on the Block came on The View and I was able to relive my teenage years by dancing and singing to the tune "Step by Step". It was awesome. I can't wait to get their new album, which came out this week. I know, most of you are rolling your eyes at me, wondering how I could listen to them. Well, get over it. I do. And, I love it. In my defense, I also love rock, country, show tunes, some rap, some pop, and classical music. I am, as they say, a well-rounded musical enthusiast.

Anyway, I digress. Dad and I headed to chemo, and all was well. I seemed to be doing okay until we headed home, and once again, the fever monster seemed determined to take over my body. I literally had sweat dripping all over me on the ride home (which couldn't be completely attributed to the temp in the car, b/c Dad was okay). Within a couple of hours, I was cuddled up on the couch, under two quilts and a blanket, shivering from my fever. At the highest, it was 102. Not good. We called the after-hours line, and Dr. Rakkar (who was the dr that I see in the hospital, and is in the same office at my oncologist, Dr. Ondreyco) called back and told me to take two Tylenol every four hours and to call the office in the morning. No, really, I swear that's what he said.

I spent the night going back and forth between the sweats and the shivers, dealing with a pounding headache, and generally feeling crappy. Wednesday morning (yesterday), Dad called the drs office and was given an appt with Bill, who we had just seen on Tuesday, at 11am. We get to the office, and my temp seems to be okay (I think it was 97.9), but clearly I am not. They take me into the corner room and Bill comes in with this pretty downtrodden look on his face. It was clear to me at this point that they didn't know what to do with me. They took more blood cultures, another CBC count, and ordered a chest x-ray and a urine sample. They took off the pump and said that I was stopping chemo, with no definitive date set to restart it. I think they want to make sure that we get whatever the hell is doing this to me taken care of first. Anyway, basically the ruling yesterday was that I am now on some really strong antibiotic, off chemo, waiting for the results from the chest x-ray and blood work (urine sample today - fun). It seems like no one really is sure what's going on. They don't know if it's the same thing that happened last time, or if it's coincidence that I am sick in the same manner twice in a row.

However, Dr. Rakkar happened to catch me in the waiting room while I was being checked out, and he said that he thinks this is happening b/c my body is having a bad reaction to the Oxilipalantin, which is the drug they give me on the first day that causes the cold sensitivity, etc. Hmmmmm - I asked if he would mention that to Bill, and he did! I don't know where this will go from here, but that's kind of my gut reaction, and has been. We will see what happens. Once I start feeling human and live again, I am going to try to research some other forms of chemo (that can be used in addition to the 5-FU and Leukovorin) to battle this damn cancer.

So, I wanted to let you all know, this isn't going to be an easy trek. Apparently, I am meant to go through hell and back on more than one trip, and I know that there is a reason. I am hoping that this allows me to have more compassion and patience in my life, and that I am able to help someone else get through what I am going through. I tell you what, I wouldn't wish this on ANYONE.

Please, pray for me and my family. It appears that this isn't going to be an easy road, and we need all the support we can get. I will keep you updated as I get more information.

Comments:

Phil, Sharon & Rachael said...

Grrr, I'm sorry this round is troublesome too. Just know that we're all continuing to pull for and pray for you and you'll get through this. Just one day/round at a time.

September 4, 2008 at 10:58 AM

 Amanda: said...

Oh man - I hated the infections that came along with Joshua's chemo... Hope you shake this soon and can get back on track.

September 4, 2008 at 5:48 PM

 Dan said...

I was diagnosed with colon cancer at the same time you were. I had surgery and started chemo 4 weeks later, but decided against the treatment you're having (oxaliplatin, leucovorin, 5FU) in favor of just oxaliplatin and xeloda. I have one IV treatment (no port) of oxaliplatin every three weeks, and two weeks of xeloda orally (one week off). I have NO nausea, the side effects are manageable, and I actually returned to work the same day I started chemo. Ask your doctor about the Xolox treatment (oxiliplatin and xeloda). Hope this helps.

September 5, 2008 at 5:36 PM