Tuesday, March 9, 2010

Oncologist appointment 3/8/2010

Hello everyone,

I'm very thankful to feel good this week- and it's easy to say right now- but after last week I hope to never take plain old energy for granted again.

I'm supposed to meet with my oncologist before every chemo session (every other Thursday if you've been paying attention.) But, on Thursdays he holds office hours in Lake St. Louis and my chemo is in St. Charles. Apparently now that my file is the size of an encyclopedia they can't transfer it to another office. So, I'm unable to see the doctor on Thursdays- long story short. It would save us one of the horrid co-pays if I could do chemo and the appointment in one shot, but I guess not.

The point is- I saw him Monday. They aggressively snatched some skin off my finger to test my CBC...complete blood count. I have to say, cancer is actually kind of spoiling me. No more waiting days or weeks for test results! They are always on top of it! They practically followed me from the lab into my exam room with my stinkin' blood levels.

I was hoping to give my new port a work out; I mean that's what it's there for. I got a little bossy and said "Use my port. I numbed it and everything." I was so proud. They use it to actually draw blood- but the CBC requires such a small sample they just pricked me instead. Ok, fine... have it your way.

Let's see, they mainly check for three things. White blood cells and platelets are very important but I don't remember what the third one is. Something equally important, let's say. Everything has taken a severe hit as a side effect from the chemo, and that was expected. My white blood count went from a normal 10.8 to 3.5. after just one session. OUCH!!! So, I just have to be extra careful about germs. Try that while being around snotty toddlers and two school aged girls dragging some bug into the house every week! :)

They will not administer chemotherapy if my count falls below a 3.0. They will test me again tomorrow right before my session, and if it falls too low you just get sent home! Another option is the nasty Neulesta shot each week to boost the white blood count, but those are not fun. They shoot it somewhere in your back and it can cause severe bone aching for days. No thank you. I'm praying I hang out at the 3.5 for the duration of my treatment.

What else- Oh, I asked the doctor what my life will look like this time next year, and five years from now. Of course our goal right now is to beat this, but I really needed a snapshot of my life going forward. He said assuming we get the cancer now with chemo and radiation (and as aggressive as ABVD is, that's an assumption for now. Some do not respond to chemo and move on to stem cell/bone marrow transplants but we won't focus on that right now!!!) I will have examinations every 12 weeks for the next five years. I will also have CT/PET scans once or twice a year.

If we get the cancer now, and no lumps, concerns or cancer are found in the next five years- then I will go to a once a year appointment and full body scan.

Many people respond to chemo and radiation and go into remission for 20+ years. We all probably know that some relapse several times. He told me it is crucial for me to stay on top of things and regularly check myself for anything out of the ordinary. It's kind of funny- lymph nodes are ALL OVER your body so he said I need to be feeling and examining everything from my face to my ankles! Again, the radiation puts me at risk for secondary cancers, so regular female health visits and breast exams are crucial (due to the localized radiation on my neck and chest.) I'm not quite sure how I'm supposed to check my own lungs for cancer- that will be a challenge. :)

I'll be honest, the secondary cancer piece of this really ticks me off. I've got one cancer I'm going to have to watch for the next 50 years, but now I'm susceptible to several more, just because of my treatment??? Are you kidding me? There is quite a bit of debate surrounding radiation because it is basically used as insurance. The chemotherapy should kill the cancer. In laymen's terms, radiation just hunts down any 'baby' cells that may be lurking, whether they are really there or not. Some doctors don't prescribe radiation at all, and stop after chemotherapy. Many patients get second and third opinions before making these decisions.

Daniel and I are in the mindset to hit this as hard as possible the first time around, so we're going to do it. I'm still ticked though.

COMPLAINING ALERT
My doctors certainly want me to be optimistic, but they warn against expecting my life to return to 'normal' after treatment. 'Most' cancer patients, and I use that loosely, get cancer at an older age therefore endure the after effects for a shorter time. Having to watch for 16 different cancers (ok that's an exaggeration) for the rest of my life is not something I'm thrilled about. Staying positive is crucial of course, but taking a moment now and then to be realistic is equally important.

I'll quit whining now. I have life!

We're going to choose to be thankful that radiation (and chemotherapy) even exist at all and can hopefully stop the cancer in it's tracks the first time. We'll just do all the monitoring (and praying) that we need to going forward. I'll get over it.

Hair usually begins to go between session 2 and 3 so this will be interesting. They told me to expect a constant 'too tight pony-tail feel' as a sign it's coming. Ladies, you know the feeling I'm referring to. Nice. I've decided if it REALLY starts coming out I'm taking scissors and giving myself an (inch or so long) pixie cut for a while to see what I look like with SHORT hair. We'll see-

Oh, did you know that many patients claim the hair on legs and underarms usually hangs on for the ride? Spring is coming, can I catch ONE break please, follicles???

Chemo in the morning! I'm going to see if my nurses will pose for me so you can meet them. Happy Wednesday everyone!!!! :) :)

Sunday, March 7, 2010

Compilation of thanks

I chose to title this blog with how thankful I supposedly am, but I've neglected to mention my thankfulness since. So, here's a compilation of thanks:

I'm thankful that:

My puggle loves me whether I have hair or not! By the way, I still do.

After a few gruesome days I thought would never end, I started feeling better again. Even the worst 'crisis' is temporary. It has a beginning and it always has an end.

I can still sleep on my right side comfortably even if the port prevents me from lying on my stomach or left. I'm truly thankful I'm sleeping well at all because some don't!

For friends and family. Goes without saying.

I don't have to spend any more money on flavored sparkling bottled water now that I've bought a 40 pack from Costco and know how terrible it is. I'll stay hydrated on regular water, thank you.

Modern medicine and research. Without it my story would end very differently! Pick a cause, go out and SUPPORT it! :)

My friend Colleen is coming over Monday night with one of my favorite pizzas!

My son is too young to remember this time in our lives. The recurrent check ups, scans and screenings will continue throughout my life, but if we can get this right the first time he won't remember the effects of chemo and radiation. I realize they have to rid me of this right now but I have faith it will get done. After that- Relapse? Not in my vocabulary.

Our girls are old enough to understand this without being too scared.

My compassionate husband offered to shave his head when I lose my hair. I told my sister- I took him up on it until I realized- Wait a minute, I'll be the one looking at him all the time. I politely replied, "No, thank you. Nice gesture though."

My mom is still alive to tell me it may get harder before it gets better, but everything will be ok.

All of you for your comments and support!!!

That's all I've got for now. I'll try to post more 'thanks' as I think of them. I don't want to be one of those people that acts thankful but really uses it as an opportunity to complain- so the above statements truly are things I'm thankful for. I left a few 'iffy' ones out. :)

Oncologist appointment Monday morning and chemo on Thursday! I'm ready to tackle the week!

Saturday, March 6, 2010

Hair everywhere

After my last one or two DOWNER posts I wanted to log on for a moment to post some good news.

I feel GREAT today! I feel almost normal, and just in time for the beautiful weather this weekend.

My friend Gwyn mentioned on facebook (I'm surprised my spell checker doesn't recognize that word with the site being such a sensation nowadays) that she was heading down to the Moolah Shrine Circus parade today so I wrote her and said "I'm coming with you!"

We took the kids and had a great time watching the (fake) animals, shriner cars and floats in the parade. We grabbed lunch out and our toddlers got to know each other better. What a cutie little RJ is!

I returned home about 3pm to find a package from Gwyn in my mailbox. Had we known we were getting together this weekend she could have saved the $3.09 in shipping, huh? She sent me some gift cards, a cute petite sized (yet somehow fancy) word search book and a book of useless information (I'm not being rude, that's the title of the book) that I can take to chemo to pass the time. Somehow, it felt like Christmas opening that pretty flowered package!

Thanks so much Gwyn.

Guess what else I got in the mail today? HAIR SWATCHES!!! Yep- nothing like opening your mailbox to find a Ziploc bag full of hair. I ordered a 'color ring' from a wig company I've decided I like (see #5 in the wig pictures..although many of you contacted me privately this one definitely got the most votes.) Anyway, I now have in my possession every single color they sell and I'm very excited about making a selection this evening. Never did I think my idea of a hot Saturday night would be picking out the shade of my new wig. When you send the color ring back they refund your money or apply it toward the wig purchase.

Photobucket

You may not be able to tell but there are well over 100 colors on this ring. Everything from Java Frost to Vanilla Lush and Creamy Toffee. Starbucks run, anyone?

What about the nice ladies at the wig shop down the street that told me not to put my head in the oven, you ask? Those stinkers spent over an hour with me trying on different looks. They were so gracious and helpful and I'm very thankful for their assistance. But, let's cut the bull here. Their wigs are almost double the price for the same, exact company, style, make, brand and size you can buy online. I'm not going to pay $350 for the same wig (identical..same brand name) I found online for $168. I've been torn for weeks on this because I want to support this small business and I want to thank those ladies for helping me make a decision. So, I compromised when my sister in law was in town last weekend and we paid the nice ladies a visit. We chatted some more about new head wraps and scarves they received recently. Then- I purchased a wig 'starter' kit there complete with a mannequin (so the wig holds its shape) wip shampoo, wig conditioner and a special wig brush. This all cost $40. So, I feel good about buying something from them (that I STILL could have gotten online for half the price.) I just can't give them my $350, I'm sorry ladies.

For no real reason, here is a pic of our kids and all the Kendrick cousins- in one place, at one time. Such a rarity! Noah and Izzy (far right) look more and more alike all the time. Have a great weekend everyone. :)

Photobucket

Friday, March 5, 2010

She's a Brick.........HOWse...!!

My butt planted on the couch each evening and during nap time? Not a good look. That's how I've felt all week.

Have you seen the new Jenny Craig commercial with Valerie B. lugging around bags of..who knows what, something... to represent the extra fat she's lost? That's how I feel. No, I don't feel fat. Although the water retention and bags and bags of fluid they pump into me seem to hang around for days and that can't help anyone's body image. No, I feel weighed down. When I saw that commercial I thought- that's it. I feel like I'm carrying 40+ pounds of bricks on my back at all times. I just can't shake it.

Last night loading dishes in the dishwasher about had me breaking a sweat. I got frustrated, and have never been a violent person but for a split second I wanted to smash a casserole dish against a wall. But------ my God reminded me He is stronger. Stronger than me, and stronger than this cancer. I gently placed the dish in it's rightful spot.

I'm hoping this is just my body reacting to the first treatment (that was now over a week ago.) Maybe I'll acclimate and handle it differently next time. Some people feel worse as time goes on, but I have read of people that had the hardest time with the first few treatments.

Enough for now- I hope you all are doing well. I decided to post an 'old' photo for what many bloggers refer to as Flashback Friday! Some of you have seen these but I like them.

This is our attempt at home made 3d glasses for the girls during the Miley Cyrus 3d concert on TV a couple years ago. Don't try this at home. It did not work:

Photobucket

Wednesday, March 3, 2010

Big thank you

Big thank you to everyone for all the gift cards and nice letters I'm getting in the mail!

Big hugs and thank you to my brother and sister-in-law for visiting today and bringing me tons of yummy meals for the family. We will eat them up. The cake from the Amish community was sliced into before you were out of my driveway. I stopped for one moment and thought- I should wait until everyone is home. I realize cancer drastically impacts the entire family but for one split second I let myself say:

"You know what? I'm feeling like crap. I've got this disease in my body and I'm working hard to attack it. I deserve a piece of cake." So I ate it and it was good.

Thanks again.

Today? Hiccups. The severe, weird hiccups that come through your back and make you feel like your eyes may just pop out. No fun- but this too shall pass.

Going to rest a bit- just wanted to put out a quick thank you. :)

Awake

Not much sleeping going on right now. My husband is trying to help out around the house more, but sometimes he picks a midnight to 2am time slot to do all the shuffling around. Add to that, reflecting back to the Target post, that the generic Breathe Right strips were not worth the money. Hence- I'm awake.

My throat and jaw felt a little better during the day today...yesterday...whatever day it is. I used the mouthwash and it helped some but you have to hit the sore areas just right in an allotted amount of time before this thick stuff just congeals on your tongue, scarring your taste buds for what seems like forever. I feel like a contortionist but I still haven't gotten the process down just right.

I did go up to the cancer center to get checked out (wasn't this supposed to be my off week I was looking so forward to?) They see the beginnings of thrush so I got another prescription to add to my collection. They were very happy I came in before it overtakes my mouth or causes mouth sores. I now have pills for thrush, and three different mouthwashes to use and alternate throughout the day to stave off infections. I can't even use Scope regularly so I'm not sure how all this is going to work out.

There's a financial lady at the center that always tracks me down to talk, and I saw her today. I've tried hiding from her multiple times, but have you seen an IV pole lately? I can't fit behind those things. There's nowhere to go and she always corners me. The good news is her entire job is to help patients find programs and hidden money. Today she told me about a supermarket (of sorts) for cancer patients where you go and pick out food for free. It's in the city, but many people use it and rave about it. She also had me sign three or four papers and said I'd be getting a check for $150 soon. I don't know why, or even who... or what organization is sending it. For all I know I threw it out with the junk mail.

I realize I usually wear one of my trademark track suits up for chemo and some appointments, but I began to wonder if I had POOR stamped across my head or something. Today I realized she just does this for everyone. What a nice lady.

Ok I'm going to try to rest now. I hope everyone makes it a great Wednesday-

Cathy

Monday, March 1, 2010

Magic Mouthwash

Yes, there is such a thing and I'm picking mine up shortly. I hate to start this post on a down note but I'm in a lot of pain today.

Saturday evening some family members took us to dinner and I got Steak Diane. The seasoning hit me strangely, I took a nausea pill and shortly thereafter my throat started to burn. This has continued throughout the weekend (and yes I do have a direct line to an on call oncologist after hours and on the weekends but chose not to use it) and by this morning it was getting downright unbearable. Tylenol, Percocet- nothing I have for pain is touching this sucker. The inside of my throat and entire jaw line feel like they're going to explode.

I called the cancer center and they wanted to get me in to check for thrush. I told my friend Paula- what am I.. a six month old?? Anyway I should have gone in but I told them I was busy with my toddler and his friends and it would have to wait until tomorrow morning. Big mistake.

This afternoon I feel like a full fledged fire eating woman and I need some help. My sweet husband is making the rounds at his job asking anyone who even looks like they know someone with cancer if this is a common side effect and what we should do. All, including my nurse, say yes it is a horrible side effect of the Bleomycin in my ABVD concoction of chemotherapy. For some reason I felt a bit better that I didn't bring this on myself with Saturday night's dinner. They still wanted to see me before calling in a prescription. I was fine with that until about 30 minutes ago.

I have been unable to eat or drink all day. It just won't pass through my mouth onto my throat. The time on this blog always posts weird, so I'll just tell you it's now 4pm. The thought of spending the evening like this makes me want to cry so...

I got to thinking- my doctor and his nurse are there to help me, right? I'm not one to call and DEMAND things but dag it hurts! So I called up there, my nurse was busy so I said to the receptionist:

"Look, I haven't eaten or drank all day. That can't be good if I'm supposed to stay extra hydrated on chemo. I know they want to see about thrush first and maybe that would change the prescription they would give me but right now I just need at least SOMETHING to help me because I don't think Chloraseptic is going to cut through this mother!! It hurts so much it's unbearable to talk to you!"

So, the nurse called me right back and had already called in the prescription. My son is STILL napping (rough weekend?) and I'm writing this to make time pass before I get my butt up to the pharmacy. I heard the word lidocaine and something that sounded like biscuit. I was just overjoyed to hear they called something in so I deleted the message and everything else is a blur. It could be kool-aid for all I know. Who knows what it is but I just hope it works.

Magic Mouthwash comes in different forms depending on the doctor's orders. It usually includes a mixture of lidocaine, mylanta and benadryl with a few other drugs thrown in for flair. The pharmacist usually grabs the ingredients and whips it up right there. Since my throat is so sore, I not only have to swish I have to swallow some of the junk. Wish me luck!