NOVEMBER 4, 2008

Cancer

A quick thought....

Yesterday in group, we spoke a bit about the word cancer, and what it means. How cancer is considered to be a disease, and nothing more than that. Someone brought up how, for the cancer patient and their families and friends, cancer becomes so much more than a disease. It becomes a way of life, a factor that you have to take into consideration with everything you do, at least for the short-term. For me, cancer has literally changed everything - my relationships with people, my outlook on life, how I view everything from food to people to politics to my kids.....

It's an a complete and total lie if someone tells you life can resume as normal after cancer, at least immediately. That's what I am finding out, and that's what I am learning. I am (God willing) at the end of my treatment regime - 2 or 3 more week of chemo, and a PET scan at the end of December to determine if I am officially in remission. It has occurred to me recently that my life is never going to go back to where it was before....that my life will never again be the same. And, I think I am starting to mourn that loss. 

On a personal note, I feel like there are people in my life who expect things to go back to normal, and I am struggling with how to help them realize that I can't go back to that life, at least not in December, once I am through with chemo. I get the impression that people think that things will just bounce back to the "normal" from May. I can't. I am physically dealing with a lot, and word has it that it's going to take my body anywhere from 6 months to 2 years to fully get rid of the chemo, and to finally start to feel "normal" again. Two years. Can you imagine that, on top of what I have been through? Is it any wonder that I am depressed? 

Cancer. 6 little letters, and such a HUGE effect on those who are dealing with it, whether as patients or caregivers. It's such a life-altering experience, and I can't imagine that I am ever going to be the same. This is going to be such a turning point for me - at least the others in my life, I have had some control over. This one, I had no warning, no prep time, no way to get ready for it. You just get body slammed with this news, and then have to deal with the repercussions. 

So, I know that this is part of what I am internally struggling with. I am fighting a battle with myself, in trying to accept that I can't go back to the old normal. And, I am now fighting a battle with how to deal with the other people in my life that I feel aren't accepting that I CAN'T go back. Interally, there is a way at hand, between the cancer cells and the chemo. There is also a war at hand in my mind, on how to handle these things. I am seriously considering setting an appointment with a psychologist. I think that I need more help than I am currently getting, mentally, to deal with what I am going through. If you are in the Phoenix area, and can make a suggestion, please let me know. Preferably West Valley! 

And, with that, I sign off.....I woke up in another "bad mood" this morning, so I don't think that bodes well for my day. Although, it is Election Day - did you vote? I did - thank goodness for early balloting!

Comments:

maurmm said...

Hi Michelle,
This is Maureen Obit from chemo. I just started seeing a counselor for my depression and how to deal with my cancer. She is fantastic and I thought I would share with you. Her name is Kathleen Driscoll, R.N., M.A., L.P.C.
ther number is 623-979-4141. I think you would like her a lot.
I had some bad news today from the dr. My tumor markers are on the rise, they went from 200 to 1000. I will be going for a CAT SAN tomorrow to see how things are looking. I am scared to death to find out bt I need to know if things are getting worse. I hope I see you again in chemo. It was nice meeting you.
Take care,
Maureen

November 4, 2008 at 6:09 PM

 Amanda: said...

Michelle,
When we were going through our "war on cancer", we had to learn that same lesson. Things don't EVER go back to "normal" in the old sense. But, what does happen, is that "old normal" is replaced with a "new normal". I used to joke about our "new normal", but we are getting close to 5 years out and it never went back to the way it was.

But, I will tell you this... with the blessing of time, there are times (every once in a while) when I am thankful for what we had to go through. A lot of good came from our battle for Joshua's life, and I wouldn't trade that for anything. But, some days I do wish cancer was something I didn't have so much personal experience with...

Hang in there. And, people don't "get it" unless they've gone through it. They might be sympathetic, and sorry, and try their hardest to understand, but they just DON'T (no disrespect to anyone... I didn't get it either until we lived through it). Not the way we do. And I don't even "get it" like Joshua does, since he's the one who was waging the war for survival. Not that he understands it yet, but when he grows up, he will.

There will always be people who will expect you to go back to "normal", but you are never going to be the same again, and some people just can't imagine how huge that really is.

November 5, 2008 at 8:43 AM

 bflikke said...

Hi Michelle, 
I have been from time to time following your blog. May 23, 2008, I was diagnosed with colon cancer at the age of 32. At the time I had my MRI and PET/CT scan. The scans diagnosed me as a T3N1 stage, but my doctor was so sure it was wrong. I had a surgery called a TEM (newer procedure). So 4 mos went by and I was hoping that life would somehow go back to "normal", but was waiting on my 4 mo ultrasound just to make sure. Bad news-the lymph node was in fact involved. My PET/CT was yesterday and I am again awaiting the results. Life as I knew it left me when I heard the word "CANCER". It's such an ugly and life changing word for sure! It's not so much that I am worried for myself either, it's what I have to put my family through. Like you, I have two kids and a husband and I just pray to god that they can get through this journey and not hate me for putting them there. Your blog inspires me to push on. Stay positive!!!!

November 6, 2008 at 10:17 AM

 mylilgizmo said...

Hi Michelle,
My name is Beth and I'm 32 years old. I'm having my colonoscopy on the 18th Nov. and I expect to be told I have cancer. I've had symptoms for a couple years that I didn't recognize as a problem (thought it was just me). Now I'm worried about how advanced the cancer will be due to my ignoring it. I'm also married with 4 kids under 6. Your blog is not only inspiring but also informative. Thank you.

November 13, 2008 at 9:59 PM

NOVEMBER 3, 2008

Is this what depression feels like?

Well, first, an update to the chemo from last week. While it sucked, big time, the positive is that I was able to recover fairly quickly, and that was a welcome relief. Halloween with the kids was wonderful - they had a blast, I was able to hand out candy and, for about two hours, hang with the neighbors, so all in all, it was a success. I am hoping to have the energy later this week to download the pictures of the kids, and I will try to post at least one here.

I ended up having neuropathy SO BAD last week - remember, that's where I lose feeling in my extremities (mainly my hands and feet/legs), but that is also coupled with that odd, awful pins-and-needles feeling that you get when your foot falls asleep - yeah, not fun. Numbness and feeling - it's an odd sensation. I can't explain it any better than that. Sorry. Anyways, because that has gotten so bad, I have a doctor's appointment on Wednesday to discuss options for dealing with that. Probably, we will stop the oxalipalantin, which is a welcome relief at this point.

So, I guess that leads me to my next step - depression. With all that we have going on with me, with Levi's job search (still nothing on that front, damn it), and with the holidays approaching, I guess it's understandable that I am feeling a little down. However, I am pretty sure that I am on the downhill slide to full-out depression. While I find things funny and still find joy in my kids, I am having such a hard time trying to find joy in anything else. Food doesn't taste good. Sleeping isn't a relief, and I wake up tired, in spite of the sleeping pills. I don't want to talk to anyone, and I don't want to deal with the everyday things that I am responsible for. Yup, pretty sure this is the dreaded depression.

I think it's just that everything is hitting me all at once. The physical side effects are getting so much worse each treatment, and I won't go into them all, since some of you know me really well and they are fairly embarrassing (and I don't want to have to face you again, knowing that you know those things about me). The emotional toll is getting to a point where I would rather quit the treatment right now than continue. I don't feel like I have the strength to go on. I really don't. Of course, right now, I have no fight in me. At all. Levi and I are arguing daily, and I really could care less. I mean, why bother?

So, that's me, right now. I have been honest up til now, and there's no point in sugar-coating it now. Here it is - I am depressed. I hate cancer. I hate the fight. I hate that I have this, and have no control over it. I hate that I have to deal with this, while there are people in this world who are horrible, awful people, and they are healthy and happy. How is that fair? Really - I am a decent person. I try to live a good life, and I try to be a good person. And yet, I have to go through this. Where's the justice in life?

I know there are people that are going to tell me that there is a plan, that there is a reason. Up until now, I have been able to accept this. But, tell me, what's the reason for this? What's the reason for us having to go through all of this? I can't imagine. I just can't imagine.

Again, the fight is gone. Kaput. It's just not there anymore. I don't have the energy to fight this disease. I don't have the energy to fight for what I know is right. And I could really give a rat's ass about much of anything right now.

So, I am hoping that I can go to the doctor's, get another prescription to course through this unhealthy body, and maybe that will help to bring back some of the fight. 'Cuz right now, it's gone.

Comments:

Amanda: said...

Oh Michelle... If I were privy to the sacred answer to the question "why", I would share it with you in a heartbeat. But I just don't know. 

I know that while it didn't make what we went through easier at the time, we are now able to take that experience to make a lasting difference in other people's lives. Not an answer to "why", but at least something good ended up coming out of this. A whole lot of people found faith, thanks to Josh - again - didn't make it easier at the time, but something good that came out of it in time. 

I guess I'm at the point far enough away from cancer that I can be a little thankful for what we went through. It SUCKED, no doubt. The hardest thing we EVER had to do, but we did it. And now, with the blessing of time, we are able to take that and make some good because of it.

But, I know that it doesn't make it easier now. And it hurts now. And it's hard now. I hope that today is a better day for you. Thinking of you always.

November 4, 2008 at 6:14 AM

 Freedom Runner said...

Michelle,
I forget exactly how I found your blog...through a friend, I think (Jennifer?)...this post caught my eye. I can't relate to your cancer experience (and I am so sorry to hear that you are facing this challenge), but I can relate to the depression. I actually wrote about it over at my blog a couple weeks ago. It's good that you recognize the symptoms--I wallowed in something worse than misery for several years before seeking out alternative treatment that, thankfully, has been VERY effective. I'm not sure that I can advise any sort of treatment, but I can let you know that you are not alone. My two saving graces on the road to recovery have been the support and patience of my husband; and the relief that comes with being truthful about where I'm at with the disease day-to-day, where I have been, and where I have the ability to go with the help of my own determination and my support network.
So, hang in there. Ask for help, and take as much of it as you can get. And most importantly, KEEP FIGHTING! Remember, YOU WILL WIN!

-Freedom Runner

November 4, 2008 at 6:55 AM

OCTOBER 30, 2008

Quick update...

Really quick, since I still feel like crap. Made it through yet another round. Levi's still looking for a job, and has officially applied for unemployment. This round of chemo made me so sick that I actually had to ask for the bucket at the drs office. Thank goodness I didn't need it, but it came pretty close a couple of times. The nausea has been almost completely unbearable, and I can't imagine what it would be like going through this without my tanker full of anti-nausea drugs.

I am done, though. Neuropathy (the tingling and numbness from the chemo - not the cold sensitivity) was really bad this time. I am struggling to type today (if you see a typo, blame the chemo), and opening pill bottles is almost impossible. My fingers and toes are numb bu tso sensitive at the same time - it's an odd sensation that I can't explain. I mentioned it to the nurse today, and she set me up with an appt with Bill (my PA) on Wednesday.

Halloween is tomorrow - I am hoping that the nausea starts to go away. I tried another new anti med today - didn't do a thing.

As my mom said, the depression hasn't kicked in...yet. Maybe now's the time. I know I am fighting, and I know I have to, but I am so tired......here's hoping......

More tomorrow...if I can still type! :-)

Comments:

Jennifer Witham Buck / Graceful Expressions said...

happy Halloween!

I am so praying that you are feeling better. We are also praying for Levi. 

we love you... 
remember - journaling is a great way to help with the down moments. just get it out by writing...

October 31, 2008 at 9:42 AM

OCTOBER 27, 2008

Wow - has it been a week?

Wow - it's hard to believe it's been that long since I posted. It's been quite a week. Let's start with the big news - unfortunately, Levi lost his job last week. Last week was spent freaking out, wondering what in the world we are going to do. I got the call on last Tuesday morning, got confirmation on Tuesday evening, and spent the next day watching the planes (count them, FOUR layovers) that were bringing my husband home.

When he got here, I finally felt, well, whole again. One of my best friends mentioned to me that maybe the reason he is here is that whatever "Being" you believe in (I choose not to use this forum for my religious beliefs, so fill in "Being" with what you believe in) knew that I needed the support here, in Phoenix. So, I am hoping that that's the case, although if I end up in the hospital I will be pretty pissed off. :-)

So, we spent this weekend looking for jobs for him, and it feels like we applied him to a hundred positions. The waiting now begins. We are still searching for a telecommunications position, but ideally, we are looking to move him into another, more stable line of work. So, if you know of anyone in the Phoenix area looking for a decent, hard-working, reliable, mechanically-inclined, intelligent person with his own vehicle and that speaks English.....let me know. He's available YESTERDAY!!!!

Let's see - what else. I have to think about it. Um, I made it through the last round of chemo with some pretty rough side effects.....nausea being the worst of them. I am DREADING the nausea tomorrow, but I know it needs to happen. Again, it's the old "heart versus the head" conflict, and while I know that I need to go through this, I don't want to. Although, it will be nice to be at the end of this next week and to be able to say "I only have 2 more treatments..."

I did have a doctor's appointment with the PA last Friday. It went really well. My bloodwork looks fantastic, and all of the side effects that have gotten worse (nausea, neuropathy, and sensitivity to cold) are totally normal. Not fun, but normal. And, (this is a huge maybe) they might discontinue the Oxalipalantin (the nasty drug with the most horrific side effects) after this round, b/c of the neuropathy. There won't be any kind of negative effect on my prognosis at this point if we discontinue it, so here's hoping! (I know, there are people out there that will tell me to continue it.....we'll see what happens....)

What else? There is so much, but I have been SO busy this past week. We took the kids to a Hallweeen Bash in town this weekend, which was fun getting the kids dressed up. It was especially nice for me b/c I will only be a day out of chemo and thoroughly unable to enjoy Halloween on Friday.

Um, I think that's about it. As you can probably tell, I am still pretty depressed about the job thing, and I am struggling to maintain a positive attitude. But, I know that we will make it through this, and be better people on the other side. So, please, happy thoughts our way. It's going to be a rough(er) road than expected, but we are strong, and we will make it through.

Comments:

jnwhiteh said...

Of ALL of the places to find people spamming for World of Warcraft gold. For those of you that don't know, this is a black market that sells in-game goods for real money.

How bizarre! Michelle, if you can remove the comment, feel free.. this is just spam.

October 28, 2008 at 3:25 AM

 Amanda: said...

Eek about the job loss - but I will say that I agree that it happened for a reason, and I'm sure that will be revealed in the future. But, on that same hand, I know how tough the "little things" can be during treatment, and this is a "big thing" regardless of everything else, so I will be sending positive thoughts your way. Here's hoping the side effects are minimal this time around(hey, it could happen!). Hang in there... you're getting closer and closer to the end of all this.

October 28, 2008 at 7:25 AM

Later:

$50 more!!!

You know how I am raising money for the Undy 5000? (If you don't , please click on "Support My Team Here" on the right-hand side of this blog!) Well, I am $50 away from my goal of $1,000. Can you imagine? I never thought I would make it to that, much less be able to blow that number out of the water. And, it looks like that's what's going to happen - maybe I shoudl raise my goal to $1,500?

Wow - I am blown away by people's generosity and support of me through this journey. I have had people donate to my cause that I don't know. I have had people donate to this that I never would have expected. And, I have had more people donate than I thought possible....

So, to all of you who have been SO generous with your contributions, thanks just isn't enough. Your contributions will be put to good use, to try to prevent and beat this horrible disease. Thank you a million times.

And, if you haven't had a chance yet to donate, the walk/run is less than a month away. November 15th is almost here. Please consider donating whatever you can spare - $5? $10? $25? Everything helps.

Again, thank you for your support - you are all my angels, and MY inspiration.

OCTOBER 17, 2008

So close, yet so far away....

I think the hardest part of chemo at this point isn't so much the physical demand it places on my body, but the emotional and mental drain it has on my spirit. I expect the physical demand - you have to. You are literally pumping chemicals into your body that are meant to seek and destroy cancer cells. Along the way, unfortunately, they also do the same to healthy, good cells, so there are losses on that front, but you have to take the good with the bad. And, knowing that going through this will get me through to the other side makes taking the pills, dealing with the pain, and handling the nausea a little easier.

However, the mental drain at this point is so hard. I feel like I can see the end. It's RIGHT there. And yet, with each treatment and cycle, it gets harder and harder to recover physically, which is so tough to take emotionally. You want to feel good - mentally, you feel like you should be able to conquer the world. But, your body says no way. Mentally, you know that you are capable of SO MUCH more. I know that I can take care of my kids. I know that I can take care of my husband. My house. Decorating for the holidays. Taking Julia to her carnival tonight. Playing with Kevin so he doesn't wake my dad up 6 times each night. But, I can't. I can't do those things right now. Because of the cancer.

I want so badly to live life again. And, I know that next week, I will start feeling better, I will start working again, and I will go back to living the "life inside cancer". When push comes to shove, I just want to live life without cancer again. I know that I will get there. I will always be a survivor (I think that's the first time I have used that term here!), but I can't wait to get to that point. I want to get to the point where cancer isn't the single most ruling figure in my life. I want to get to the point where I am the one making the decisions, not chemo, not doctors appointments, and certainly not the side-effects.

Please don't feel badly for me. I don't post these feelings to gain sympathy, or to have people feel sorry for me. Quite the contrary - I post these feelings b/c they are what I am feeling. I know that there are people reading this blog that aren't able to express their feelings, but that might be able to finally get a sense that someone else is having the same ideas, the same sadness, the same fleeting hopelessness. And, it is fleeting. If you go back through my blog, you will see that I typically get depressed on the Friday after chemo. In my mind, here's why.

I have made it through another round of chemotherapy. The pump has been removed, I got my shot, and I am recovering from the chemo. But, instead of feeling better on Friday, I feel worse. Yesterday, for example, I felt great in the morning. By afternoon, I was so nauseous, I thought I was going to be sick all over the house, and confined myself to the bedroom, so that I was never far from the bathroom. Meds helped, but only a bit. Today, I should be feeling better, and I do, but still not to the point where I feel good. It's 1pm, and I still haven't showered. (Heading there - honest, I am!) It is so frustrating to be here, confined to the house, knowing that life goes on outside of the house. Knowing that my kids are living their lives, and I can't be an active participant today. Knowing that my family is living their lives (except for my poor father, who is stuck here with me!), knowing that work goes on, school goes on, and the world still continues to turn. And, I can't take part. Yet.

I think the "yet" is my problem. I am kind of a "immediate gratification" person. If I pay for something, I don't want to have to wait to have it delivered. I want it now. If I ask for something, I want to know it's coming, now. As a kid, Christmas Eve was hard, b/c I knew Santa was coming *soon* and I would wait up for hours. I couldn't sleep, knowing that come daybreak, it would be a glorious day. I don't do well with waiting for things. And, this isn't helping. I am not doing well waiting for the last day of chemo to arrive. For the next PET scan, so that I can be declared "cancer-free!" I am not doing well waiting for the end of this ordeal. I want it done, now. And, it isn't. Yet.

But, there is hope is the word yet. It implies that the end is coming. It implies a solution to a problem. And, mine is here. Chemo is (God willing) the solution to this problem, for lack of a better term. I know - that's very simplistic. But, sometimes, that's what helps me get through. Simple things.

So, here's my list of simple things today. I am going to finish this post (right after I spell check it!). I am going to get my shower, then probably take a short nap. Then, I will wait while my Dad picks up my babies, and I will enjoy the time I have with them. I will call my husband (who is back in FL, in case anyone is counting!), and I will get to bed at a reasonable hour. And, I will make it to tomorrow, and hopefully feel better than I do today.

How's that for a simple to-do list?

Comments:

Happy said...

Hi Michelle,
Just wanted to tell you that I have thought of you every day since we have met. Know that you are in my heart and prayers. Who would of thought that Craigslist would bring me a person like you. My aunt just got her port put in yesterday and will begin chemo next week. Even though I know chemo is tough I also know this is the way to full recovery. Unlike my little friend (my neighbors daughter) who will soon finish her fight will cancer, my aunt caught it on time. My friend is now 78% cancer and isn't given much hope. (1-2 Weeks max) I'm sadden but at the same time glad to know that God will recieve her with open arms. I hope that you feel better and if you ever need anything, anything at all feel free to call me. (I'll e-mail you my number) I'm sure I won't be called on much, you seem to have a wonderful support group. God Bless You and your family,
Feliz Reyes
P.S. Seen you on the News!! You go Girl

October 18, 2008 at 10:13 PM

 Amanda: said...

I promise it's not this hard forever. Some days, I kid you not, I would focus on making it through the next 15 minutes because I couldn't handle any more than that. But, 15 minutes at a time, we got through it. You will too. I wish I had more advice or support to offer you, but please know I think of you daily.

October 21, 2008 at 7:03 AM