What I learned in Chemo Class

I actually wrote this after my first chemo treatment, but placed it here on the blog for continuity.

I am finding that a lot of people aren't familiar with chemo or the effects on a person. As Amy said...she thought it was mostly nausea. Ironically the nausea is one side effect more easily controlled. I do have some kind of nausea...the stomach clamps down and just hurts.

So welcome to chemo class.

I'm given two drugs for breast cancer...Cytoxin and Taxotere.

The common effects are as follows....

Nausea and vomiting. But they give meds to control that. Before I'm even given the chemo...they start with an iv med called Aloxi. It is an anti-emetic which means its for nausea and vomiting. This wonder drug stays in your blood for FIVE days! I could definitely tell as it wore off. My actual nausea is under control.

The second effect is loss of appetite. I got that big time. Even when I do manage eat a little, seriously 2 - 3 bites and the stomach cramping starts and I have to quit. I have lost 12 lbs in a week. I know a good deal was water because I was retaining like a sow. My cankles are gone.

Next on the list is hair and nail loss. They recommend using nail hardener and I have been.

Next is bladder irritation. I have to drink fluids like a horse to keep that from happening.

Next is stopping of menstrual cycles. That may take more than one chemo cycle. Frankly I'm looking forward to that effect. Well except for the hot flashes...

Then the lovely sore mouth or throat called stomatitis. It can actually happen anywhere along the digestive system. But I swish and spit a saline solution every 4 hours to keep it from happening.

Then next you have the risk of an allergic reaction. Taxotere is famous for causing it. So that's why they add steroids to the chemo AND I have to take dexamethasone the day before the day and after chemo.

Chemo also causes fluid retention.

It can cause diarrhea and I can attest that yes sir it does. :(

Chemo can give you a rash. I haven't gotten one this time at least.

Chemo can cause numbness in the hands and feet. I have had something like that. Kind of like carpel tunnel syndrome

Then there's fatigue. They said it would be like early morning sickness. And early in the week I think it was.

Then there's the muscle pain. Only 20% of people on CT will develop muscle pain. So I won that lottery. Doc gave me percocet and that, with a lot of sleep helps you get through that.

Late in the first week you have low blood counts. As red blood cells deminish you feel a special kind a fatigue. It's like a weary to the bone kind of fatigue and you find yourself puffing just getting up to go to a bathroom. White blood cells and platelets go down too. Basically your bone marrow stops working.

Because of the low blood count ....for those at risk they give us an injection called Neulasta. The Neulasta forces the bone marrow to work like a little sweat shop to create white blood cells. That medicine causes bone pain because of the sweat shop effect. It will help protect me from infection but it will hurt as well. I have not had bone pain since K prayed over me.

I think that's all. I had to look over my handout to remember of them.

So what did I learn in Chemo Class?

Fighting cancer with chemo SUCKS!

I AM OUTRAGED!!!!!

Marcia picked me up and went with me to my "chemo class".  And THERE WAS NOT A TEST.  The nurse was joking but I thought she was serious!  I have spent the last 3 days studying my chemo drugs and the side effects and when to call the doctor and.....THERE WAS NO TEST!  It is an outrage!  I kept waiting for the test and finally I asked.  They laughed.  Then later they realized I was serious and had believed the nurse about the test.  I told them they should be ashamed.  If you can't believe your chemo nurses, then when are you SUPPOSED to believe them?  They hung their heads and said they were sorry for misleading me.  But they were snickering.  I don't think they were very sorry.!

I had asked Marcia to go with me because I knew sometimes when you are facing big medical issues you don't always catch everything that is said.  I wanted an extra pair of ears.  KJ couldn't come...well he COULD have but I told him, not to because I wanted him with me for the port surgery.

I will be taking a chemo cocktail called CT...It’s Cytoxin and Taxotere.  We talked about their common side effects and the kind of drugs the doctors will give me.  The chemo nurse said that chemo feels a lot like early pregnancy....really, really tired and really, really nauseous.  Goody.

She talked about different programs for people undergoing cancer treatment...Several programs offered by the American Cancer Society.  It's interesting and disheartening that Susan G Komen offers nothing to people with cancer.  I guess they just talk about self exams, collect lots of money and sell pink ribbons.  When I asked if there was any classes the nurse just shook her head.  She made appointments for me with the American Cancer Society for the Look Good, Feel Better program.  They will also evaluate my “needs” and see how they can address them.  ACS is really cool, and so I’m glad Mr. Rosey has had a deduction from his pay sent to them through the United Way Combined Federal Campaign.  

Marcia and I were going to go out for lunch but there was some crisis in the parsonage, so she had to get back home.

In a moment of complete and utter bravery on my part, I walked across the street and knocked on the landlady's door.  When she answered I explained that I just learned I had breast cancer.  I asked her to extend some grace with our lawn mowing because normally I do it.  Now with KJ's condition and my chemo, it might get a little long.  Well! She would not hear about it.  She told me they would take over the lawn care and that I should just concentrate on coping with the chemo.  I'm grateful beyond words.

Fighting Cancer is Easier with the Support of Friends, the American Cancer Society, Skilled doctors and nurses!

Bad News on Top of Bad News

I got a bunch of cards in the mail today. That was cool.  I got a funny card from Becky.

We also got news in the mail that has made me sick to my stomach and KJ is foaming at the mouth. The insurance company sent a notice that they will no longer cover his treatments as they aren't helping. Uh yeah ...it does help. * sarcastic*  It's not a cure, it's a treatment. And it allows him to keep working. So on top of my own struggles I have to call his neurologist tomorrow to find out what is going on. And how we can appeal this. KJ won't be able to work without use of his right arm. However he HAS to continue working until this cancer treatment is finished. I can hardly breathe this makes me so sick.

 Sally:  is the insurance company his DOCTOR?????????   How do they know it's not helping????????????????  praying for you  

Carla:  Rosey, I'm behind on my reading but wanted to tell you that I love you and am praying for you.

Shelley: I can't believe this insurance company can do that, and I hate that it causes extra stress for you guys who have to take care of it! I will pray that the neurologist’s office can take care of it quickly and painlessly. I'm sorry you have to deal with this on top of everything else. I noticed in another post you talked about being tired from the emotional toll of it all, I am paraphrasing, can't remember exactly, but anyway, I can certainly see how that would be true. I will be praying for God to give you extra strength and for these things to be taken care of and stop stressing you out. Prayers for KJ too, lots of them! For his body, for his treatments to continue, for his work, for his emotions, for his stress, everything, and for the Spirit to intercede and pray for all the things I can't even think of to pray.  Love you guys!

Rosey:  Thanks guys. Your fiery red mad faces gave me a laugh. Cell phones don't give you emoticon choices. So I forget you have them. It's a surprise when I see one.

My sister sounded a little snarky in her message back. She claims she didn't realize she was revealing something PERSONAL.   So she will not post anything else about me. :(  She's a nurse.  I know she has to realize that a person's medical condition is extremely personal.  I don't want general John Doe talking about my breasts because he saw on her wall that I have cancer!  I am just giving it over to God.  I can't do anything else.

I sent another message stating again that I appreciated her request for prayer. But while people may debate whether it was personal or not....it was private. I don't want my condition discussed over the internet if I haven't mentioned it on my wall. I pointed out that although I posted about seeing an oncologist....I didn't discuss his findings. Because it's private to me and because I think the general public only wants to hear about cancer in general terms.  I'M still trying to come to terms with it myself.  I didn't need to open up facebook and find the details on my wall...when I wasn't ready to put them there.  Plus I think it's painful to hear that someone you know has cancer with all the hairy details. 

You guys are being so good to me. Letting me say whatever I need to say. You aren't running from it or giving me platitudes. Many of you are praying for me but you aren't just praying and running. You offer input and encouragement. I'm getting so much more support than I expected from all of you who are hundreds of miles away. Jason and Marcia have been taking me to my numerous appointments. But there's a lot of silence from other friends. They say let me know if there's something I can do. Which usually means "oh please dear god, don't bother me." I've learned already the ones who really want to help will ask...what can I do to help you?   That's a question I can answer.

Still waiting for return calls from the neurologist, it usually takes them a while.

Having Cancer is hard when you still have

 to deal with the rest of the world

Unexpected Drama

August 9, 2010

Ha! I was in bed at 8 pm. I have been very easily fatigued. I don't think it's from the actual cancer, but the emotional effort of dealing with it. Then you add sister drama...and friends concerns....and family not supporting the way you wish, it gets harder. This is KJs treatment week as well so he's getting weak. And that made him frustrated.

Here's my schedule for the week...

I have chemo class Wednesday morning at 7:45 am. That's just an unholy time to have to be out and at a cancer center. But whatever works. They will draw labs then too.  Port surgery is tentatively scheduled for Thurs....ha ha...hopefully I will be too drugged to have to listen to my sister rejoicing about my cancer.

Then Friday morning at 8 am I have a radiation consult. I really don't want radiation. But it may have to happen. It will be after the mastectomy...and muscle stretchers but before implants.

I was under the misconception that I would have a mastectomy and wake up with new boobs. Not according to this breast book I got. They will put saline inserts under the muscle wall. Then weekly I will go in and they will pump in a little more saline. Did I mention that every woman who has done this said the stretching was painful? I can't get away from it.

I WANT to wind up with the delightful Ds again. Like I had before they starting racing to see which would cross the belly button first. Lucky for me as I lose weight...the belly button sags lower too. ROFLMBO! Anyway...after reading women complain about the pain...I find myself contemplating settling for fried egg boobies instead. Slap your knee, now that's funny!

No. I will gut it out to get a good C cup at least. So anyway back to radiation talk....the process of getting radiation causes tissues to harden and shrink up a bit. So it’s recommended to hold off the silicon boobies until after radiation. This is Daily for 6 weeks! So the time frame of new boobs by Valentines just isn't realistic. Maybe by my next wedding anniversary - next July.  Then on Friday the 20th of this month...I will start chemo. KJ plans to take the day off and be with me that first dose.

I have to share this with you.  I have been blessed with an angel.  She doesn't want me to even talk about it.  But as a way of helping us through this time, she is giving a set amount of financial assistance.  KJ figured this is a way to buy a recliner without breaking Dave Ramsey's heart. So we plan to go looking this weekend for a big soft one that is easy to open and close...gotta consider how easy it is to operate if I'm weak from chemo. I also plan to guilt the sales person into a breast cancer discount. lol  So KJ will be with me for the treatment and the recliner will be waiting for him to tuck me into it. Even if I feel okay THAT day...the nurse told me not to plan on shopping. She said I may not have bad reactions during the first infusion. But within 12 hours it will feel like a train hit me. She said I will cope better if I am well rested. Then I guess subsequent treatments the reactions will start quicker and quicker.

  Do I really have to do this?

KJ was looking through the sales papers yesterday and asked if I'd like a Nintendo DS. :) I do enjoy video games. Kids thought I was such a cool mom cuz I played video games with James. It was silly how flattered I was in hearing how some snotty 9 year old thought I was super way cool cuz I played Body Harvest. lol So I told him that I'd do the first month first. If I found that I wished I had a video game to entertain me during the infusion or the week after...we could address it then. I thought it was sweet he was considering it...just something to entertain me yk?

Linderlou:  KJ's a good man! Yeah, I'm not telling you something you don't already know. I read the stuff on the other thread about your sister, and I just want to slap her silly! I can't imagine what she was thinking posting all those details on facebook without asking you first! Do you think KJ would call her and tell her to back off, or is she still planning to come with your Mom and other sister? It's not fair that you have to deal with that drama along with everything else.

Fried egg boobies? Well, some of us have those without having to go through a mastectomy. And wouldn't you know it? When I lose weight the first place I lose is not in the belly, butt or thighs where I really need to, but in the bust line. I hope that made you chuckle a bit. I'm not making light of your situation at all. You are still in my prayers

Rosey:  Well phooey. I'm rearranging living room furniture and shampooing carpet and I ripped a nail right off at the quick. Well not into the quick just at it so it looks like I chewed it off. Now I have to schedule myself a home manicure. I keep them at active length anyway. But maybe I should cut them short and smooth for a while. Then I can keep on top of nail care without them ripping again.

 

Not sure I will like the new arrangement. But my goal here is to make room for my quilting loop, and to put the recliner near the window. I also gotta get more bird feed so I can lie on the couch and watch birds at the feeder.

Well I sent a private message to my sister. I said I saw her post requesting prayer for me and I appreciated that. But I had been distressed to read that she went on to speak of my chemo treatment and classes as well as having having minor surgery. I had not made that information public yet, and was only sharing it with family and few friends.  I told her that Dr. Joe tells me there's no right or wrong way to do cancer. And it has been my decision NOT to share every aspect of my treatment in detail in public (not talking about you girls). I wish for any discussion concerning my chemo or surgeries to be mentioned in only the broadest and vaguest terms. Right now anyway, this is how I wish to preserve my privacy and dignity. If she feels someone needs specific detail please do that in private messages or in person.

So I guess we will see if that puts her panties in a bunch. But I'm praying she accepts it with grace.

I finished the rearranging of the family room. We both kind of like it. It just leaves no room for end tables. But KJ uses these tv trays constantly so we will use those when needed. It was good for me to stay busy. I have been freaking out a little this afternoon. Having actual start dates makes it so real you know. Yeah...I have this cancer. But I don't feel it real right now. I mean I feel GOOD...how can I be ill? But here I am waiting to have surgery this week. And chemo next week.

Fighting Cancer may go smoother 

when you try to plan ahead.

Sister Drama ugh

Mom and Trish are coming up Thurs. We hope to schedule the port surgery then. But if not they will help me box up all this garage sale stuff. I asked Trish to not invite Becky. I told Trish I felt Becky has been telling me how I had to "do" cancer. Praising God for it and singing...and ignoring my real feelings. I don't believe like that.  I think God understands this is scary stuff and I'm struggling.  He understood his SON in the Garden of Gethsemane. 

I know she's just coping the way she needs to deal with it. Her doctor told her he wanted to put her on tamoxifen to prevent ca. and she is refusing. She said God will protect her. Which made me feel like  ?What the heck?? what am I??..ground liver? Because He DIDN’T protect me from cancer, I’m not as spiritual?  She probably never meant it like that.  But you know what?  When you are told you have a life threatening condition, your emotions are wired.  You are sensitive and you struggle to cope.  So to help me cope, I asked that she not be invited cuz...the idea of listening to her for however long they are here....just wears me out.

And Oh heck fire!  Even as I peck this out I get a text message from Becky that they want to come Thurs. augh. Mom told her about it. I think it’s hard for mom to grasp that sometimes a couple of my sisters just wear me out. ugh

Well I will update tomorrow when I have a clue about surgery and such.

MarylandCrab:   (((person who contacted Marcia))) Yay for that!  Your job is really to take care of you during all of this.  KJ will survive, and maybe just learn to handle his own eating/food issues.  I'm glad your family is coming to help, I'm sure your mom wants to be here for you too.  And keep away the people who drain you.

Any word on whether James is moving back or not?

Margie: Praising God there is no hot spot anywhere else via PET scan. Thank you Lord!!!  Continued prayers!

Rosey: I am so mad! I got a text from Becky that she was coming with mom on Thurs.  Trish said Becky invited herself. I'm irritated about the whole thing now.  Then I get on facebook and find that Becky posted all my medical information. She asked for prayer because I finally posted I had cancer.  That was fine.  But then SHE added that it was the same cancer as moms...that I was having chemo and had to take classes and get a port later this week. Then I would start chemo.

Am I wrong for being upset? I told KJ I might have posted that information myself later. But I HAD NOT YET MADE THE DECISION! And I thought it was mine to make. I don't know why she thinks it was okay to post this, but it wasn't okay for Deb to tell everyone about mom's medical condition.  I hate this. Do I have no right to privacy or to control the release of information about my own medical condition?  

danica...or have kj do it!!!  this isn't about her~she wasn't invited to come and you don't need the drama. You don't need this making you upset!!!   I'm mad now. ugh!!!

Margie:   No way! Ugh!  I agree with D. KJ can tell her to back off.   You need to be pro-active to protect yourself from unnecessary stress. She causes stress & needs to stay away for now.

No pressure, but you do have to write a book.  :) Just kidding.

I loved the butt cheek boogie. Oh my.

I am so impressed with all the things you are doing to get ready for this. I don't even know if these things would occur to me. I think it will make everything go so much easier.

I'm sorry about the drama with your sisters. No one should post your medical info without your permission. Period.  :)  I am sorry that she is imposing her views on dealing with cancer on you. People do that with miscarriage and other grief as well, and it is never helpful.

Shelley: You continue to do what works best for you and your family, you are doing so great. You are an inspiration.  My friend made me a pink bracelet and I'm wearing it every day. It reminds me to pray. I even have specific prayers for certain beads...healing, peace, strength, wisdom for doctors, KJ and James...etc... so if you have a certain thing you want daily prayer for, let me know, and I will make a bead stand for that so I remember.

I love you and I'm proud of you.  

Rosey:   That's cool Shelley about the beads. I wish I could cancel the whole day with my family. But I know mom wants to see me before I start chemo. sigh.  I personally believe that mom wants to be here because she is not certain she will be able to come to the big surgery.   It stinks that a person can't just fight their cancer. They have to deal with the family expectations and needs as well.

Fighting Cancer is harder 

when you also have to fight your family.

Pressure Points

My Bible study leader gave me a gift bag this morning with a journal book and a warning that she hopes to read the story in print. Pressure, pressure on all sides.  There was also a box of decaffeinated raspberry Scripture tea bags. And a very nice card about how the Big C is greater than the little scary c. It really was a nice gift and thoughtful.  

And SOMEONE who will remain nameless sent Marcia a fb message asking what the church was gonna be doing for us. lol Don't know how the exact question was asked. But I have been asked to compile a list of preferences and suggestions as to foods. :) I did give up control over what KJ eats over the next 6 months. I realized I can't control every aspect of my treatment and this is one area that I need to give up. It just feels like you have control over nothing.  Whoever did message Marcia, I hope you were kind.  This is my church.

Cancer is easier when surrounded 

by caring people

The First Time We Laugh

8/8/2010  

Yesterday was odd. I felt like I'd crashed into a wall. I was sick to my stomach and just felt like that iron weights thing. KJ wound up parking me in a chair and finishing the shopping. Pretty certain there won't be chemo this week but bought foods for it anyway. I broke down and bought him cereals, soups and fish sticks. I plan to cook and freeze meal plates this week too.  It was probably just the emotional weight of everything we have had to deal with.  The physical demand to keep coping with stress weighs you down.  Some lady stopped and asked if I was okay.  I was wiped out, but either she was an exceptionally compassionate person or I REALLY looked bad.

I have to take a chemo class and have surgery to put in the portacath. I'm sure it’s an outpatient thing. There was a amusing moment in reading about the portacath. The surgeon Dr. Etters wants me to mark where my bra straps sit and where the car seat crosses. So marking for the bra is easy. While I'm dressing, I just do it. But I was like...ummmm how do I mark where the seat belt goes on the day of surgery? The only option is to sit in the car without a shirt and do it. But I can just see all the gossip from the neighbors. lol  Meanwhile, Robin said I had to take a test over my chemo before I started.  So I have the handouts about symptoms from Dr. Joe.  I guess I better start studying.

I rested yesterday afternoon and KJ grilled some Tbones. KC Strips were on sale but the store was out. So they subbed tbones. Then we I decided we needed an ice cream to finish the day. KJ tells me "okay I'll take you but you have to go in for it." I popped off..."oh nice. Send in the lady with cancer!" Then we both broke up laughing. It was the first time we laughed about cancer. I still went in.

During the night I was ill first with low blood sugar but then later with a diarrhea that wouldn't stop. I don't know if I was ill with a virus, food reaction or it was because of the metformin. The met does that at first and I had to stop taking it last week after the CT tests. I started it again last night, as well as my new dose of Byetta. So this morning was not fun. I took medicine for the trots but the nausea from the byetta has lingered. I'm snacking on saltines even now. I told KJ that it does concern me if THIS med makes me this nauseous, I'm worried about chemo.

But the nurse assures me they will manage those symptoms.

Laughter is good medicine when fighting cancer