Friday, March 29, 2013

Pink Ribbons ~ Chemo, the Second Round

Pink Ribbons is a feature series I have started that is posted every Thursday.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.   This is me sharing with you from the other side of breast cancer.


These are not current events, events are from Sept. 2010



Well my friends, I've done the second dose of chemo.

It was harder this time, going through and knowing what was to come.  I knew to expect the pain this time, so I had to pull up the big girl panties and just do it.  The steroids impacted me again, and I went to the clinic with about 2 hours of sleep.  The drugs wound up my brain and I don't think it even stopped to sleep.  I went to sleep with thoughts zipping through my mind and the instant the alarm went off, it picked right up where I left it.

I'm extremely agitated, I have cotton mouth and my skin is flaking from dryness.  I swear the steroids suck every ounce of fluid from your body so you pee nearly constantly.  I contemplated wearing a pad to the clinic in case someone is in the bathroom when I need it and I have to walk to the further bathrooms.  Dribble protection you know.

Everything went smoothly as far as assessing me and getting ready.  But about 30 minutes into the dose, I started gulping and having to take deep breathes.  Mr. Rosey took one look and commented that I looked a little "green".  I nodded and he called the nurse over.  They aren't kidding when they say they will give meds to help with the nausea.  She was injecting different IV meds into my IV line within a minute.  They sent Mr. Rosey for cold clothes and anti nausea lozenges.  Things got better and I leaned back.  Interesting that I had no issue with this the last go around, but I am this time.  I'm grateful that chemo is generally not the Hollywood version anymore...you know you saw the movies where the person with cancer is puking up their socks.  It wasn't like that and I haven't met anyone at the clinic who wasn't able to control their nausea.

Dr. Joe is correct in telling me that every dose of chemo has the potential to be different.  I choose not to consider what the upcoming doses will bring.



Thursday, March 21, 2013

Pink Ribbons ~ The Problem with Hair!

Pink Ribbons is a feature series I have started that is posted every Thursday.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.   This is me sharing with you from the other side of breast cancer.

These are not current events, events are from Sept. 2010



I didn't mention that I have lost most of my hair although I suspect you had deducted that. What's left is some white 1/2 in fluff. Kind of like a baby's scalp. The scalp is clearly visible through the little bit of hair. The scalp is extremely tender. :( It feels like I pulled it tight into a ponytail at the top and kept it that way all day. Then took it down after 18 hours. Remember how sore your scalp is then? Mine feels that way all around.

There's hair everywhere...little half inch hairs. I had put off vacuuming until the shedding slowed down. It has, so I'm planning to vacuum today. I can't tell if other hair is still growing or not. On Friday I did shave the legs and chin. It was smooth. There's no hair regrowth but I can feel a rasp but not prickly. So there may be regrowth that's really really slow. I still have eyebrows and eyelashes. Might lose them and the rest of my scalp hair after this chemo. Right now my head looks like James when his started growing as a baby. Soft white hair standing up from the head. lol

I got chided by someone an acquaintance for being excited to have hair. Come on do we have to make EVERYTHING spiritual?

Let me explain. I appreciate getting cards. Its a real bright spot for me. Sister Becky sends me one seems like every other day. I get the occasional card from church friends. I enjoy the cards. But sometimes the things people write make me cringe, sometimes it actually ruins the card. Many sent very nice ones but included scripture about testing or trials increasing faith and you know the scripture. It comes across to ME that God GAVE me cancer to increase faith. Which doesn't feel loving, I don't think God works like that.

So I often just roll my eyes and tape the cards on my encouragement wall and ignore the scriptures. Frankly I rankle at the Jeremiah scripture that gets shoved down my throat. I told K that I KNOW God has plans not to hurt me. But GOD doesn't consider death to be a bad thing. I'm sorry I'm not ready to die even with heaven as the result. I still have a family that needs me! But then I also rankle at the whole Breast cancer "hope" thing. I was explaining to a friend that to me it's "Gee I HOPE I survive this." The HOPE for the cure is for those who don't have it yet. I think survivor bracelets should have FAITH on them not hope. Faith I will survive.

So this chick I know texts me that she saw my hair comment on facebook and tells me I had a bad attitude. According to her, God created us in perfection and gave us beautiful heads. I shouldn't cover it with fake hair but embrace God's goodness. I should flaunt my bald head as proof that chemo is working. I could not experience God's goodness until I embrace the bald.

Okay bugging my eyes and what the phooey is that nonsense  


Some things just stink. 
It's not all spiritual. 
Sometimes it's just crap. 

SHE had cancer and did the bald chick scene. But that's not me. It's not who I am. argh. It just makes me mad. People keep telling me I have to write my journal and make it a Bible study for cancer. I AM NOT BETH MOORE.


The day I had my chemo teach a friend from church gave me the Footprints print. I hung it in the family room. One day I was quilting and told God I was very afraid. And God told me He knew and being scared was okay. Cancer was scary. 

I looked up and saw the Footprints poem and realized I didn't have to be Beth Moore. I have said she could write a Bible study about the experience of scooping kitty litter. But I felt God was showing me that it was okay to direct my energy to coping, recovering and just getting through. It was okay to be content and let HIM carry me through that. 

And I HAVE seen God through this. He has been there in the selection of doctors and even in the timing of finding the cancer. He was there in answering Kel's prayer to release me from pain. He was there in meeting financial needs and eliminating that stress. There's even been little things like getting a card on a bad day or getting a text from someone just before a test or meeting with the doctor. So I don't think he feels rejected if I choose to cover the baldness with some fake HAIR!!! I think its okay with him.

Ugh. I hope I didn't offend anyone. I was really disappointed that this person who HAD experienced cancer, would feel the need to stand in judgement over my decision instead of using her experience to encourage me.  Jason preached a message my last time at church about Moses raising his staff in the air during battle. As long as his arms were up they were triumphant in battle. But when fatigue brought them down they started losing. So a couple men (Aaron maybe was one?) they came and held Moses arms up for him. Jason talked about being observant to those around us and recognizing when someone needed their arms held up. Then he said there is no shame if in the battle you find you need that support of letting someone keep the arms up while you fight a battle. I bawled through the whole message. I realized that's me.

Linderlou
Yikes! How does your bald head prove anything to anyone? This is YOUR cancer, not anyone else's, and it's up to you to decide how to handle it, or how to dress it up or not (meaning with hats or wigs or scarves for your head). What is that verse in Proverbs that says that even fools are considered wise when they're silent?  Some people!

I'm sorry that people aren't being more thoughtful before they speak to you. You've shown amazing courage and faith through all of this, but you've also been very honest about your fears and worries. You'll never, ever have to worry about any of us here telling you that you're handling your cancer in the wrong way because we would never think that for a minute!

Rosey:
So. Big sigh...thanks for listening to my rant. Chemo is tomorrow and I find myself in the shoes of Moses...needing help holding up my arms. Sigh. It's a little different/harder this time. Even without the "neulasta" injection I know there's going to be pain and fatigue and stomach/ issues. So its kind of like going to the dentist when you KNOW you have a cavity. yuck. I'm having to draw upon some strength and courage to get up and go in the morning.

I do have my juicer now and I'm confident that will help get food down. I juiced an orange and wow it was bitter. Then I read through some recipes and noticed that the orange juices had were to be peeled first. I had juiced the rind and all because I keep hearing that the vitamins are in the rind too. But apparently the rind is bitter. *laughing at myself*  I added about 4 oz of diet mountain dew and found it way more palatable. I realized I can always punch up store juices with fresh juices too. I'm not too fond of just plain carrot juice. But I can juice several carrots and add to my V8.  Suddenly it's powered up v8!! I can't wait to juice a whole water melon. yum.
Okay I feel a little better after ranting a little with you. Thanks girls and don't forget to pray in the morning.

Maryland Crab:
((Tina))  I'll be thinking of you all day today.  And don't let ignorant people bring you down, I do think people believe they're doing right by you, I doubt when people put scriptures in cards they're trying to bum you out.  I have a friend whose daughter is severely autistic and she occasionally gets a little bummed that her 16 yo won't drive, won't go to the prom, etc She is in general very positive and upbeat, and I don't doubt for a second she loves her daughter so much.  She too needs her arms held up once and awhile and I see nothing wrong with that.  But people will say the most insensitive things to her when she just needs a hug.  Like she shouldn't ever be sad about what could have been. 

I laughed at the beth moore cat box thing - lol.  I bet she's not constantly walking around in the afterglow of God's love.  You do what's good for you and don't listen to people who want to tell you how to react.  Who wouldn't be scared?  Most of all you are still you, not just breast cancer.  It's not your job to be the poster child for treatment. 

I'll be praying like crazy today.

Nell:
((Praying for you, Tina)) I'm sorry for this difficulty and the insensitivity of some people. Honestly, I do wonder where people get these ideas sometimes.

Rosey:
You guys have been my life line as far as venting to women. I mean I rant at KJ and he's sympathetic.  He would have said a word or two to people telling me I was rejecting God plan for me by covering my head in public. I stopped him.

Besides Rosey wants a victorian garden hat with flowers and veiling on it to cover her bald head! However I do admit to being the first one to pull Rosey off (my wig) at the Look Good Feel Better class Wed. night. They were teaching us makeup tricks for cancer survivors and I didn't want Rosey to get makeup on her.  Rosey is blonde. 

I don't think a wig rejects Gods plan!

Sally:
That's amazing people can be that insensitive.  If you don't know what to say, just don't say anything!    I'm praying for you both today!

Thursday, March 14, 2013

Pink Ribbons ~ Family Makes Me Crazy!



Pink Ribbons is a feature series I have started that is posted every Thursday.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.   This is me sharing with you from the other side of breast cancer.


These are not current events, events are from Sept. 2010


Thank you for all who have texted, send cards or checked in with me.  I'm sorry if I didn't respond the way you expected.  I find I have incorrect memories of chemo week. I fussed at James for not checking on me only to find that he'd called twice and I didn't remember any of it. Mr. Rosey confirmed all the calls.  I just don't recall it.

It is my "good" weekend. So I wanted to visit momma. She had her final cataract surgery on Friday and did fine. But I wanted to see her again before my chemo. She is planning to have GYN restructure surgery later in the month. She may not survive the surgery. But she wants a better quality of life. So we basically gave her permission to die. :( To seek a better end of life anyway.  She is in end stage liver failure that was caused by her Tomoxophen.  It poisoned her liver and her oncologist never took tests to see how she was handling it.  

This is the reason my oncologist is going to use Arimidex for me as he said...though it's extremely rare, we found when it happens to one person, it happens to other members of the family.  It's a familial, genetic response to Tomoxophen and how it's processed.  All my sisters are on different prohibitive cancer meds now.

I need to see mom and we were going to go late afternoon. Then I find out this sister and her clan are going. My blood counts are good but I still have to avoid kids.  Seriously, they said to avoid grade school kids altogether as they are notorious germ carriers. So K and I decided to wait a little later to give them a chance to leave. It was closer to 8 pm before we arrived at moms. 

I'd been so looking forward to a QUIET weekend with my momma, and visits with my sisters and niece. sigh. 

I arrived to a full house. I don't get people. I thought I was being slick waiting later so they would be gone. 

Tracy:
fragrantroses wrote:

  Seriously, they said to avoid grade school kids altogether as they are notorious germ carriers.
Ain't that the truth!!   Somehow last year, I got H1N1 and nobody else in the home did. However, I'm betting on of them brought it home from school and kindly gave it to me. 

Rosey:
I arrived to find that mom had a house full.  Not only were all my sisters there, but so were my cousins AND their kids. I wanted to burst into tears. Long drives,  being anything over 30 minutes have been sending my back into spasms. Since that first chemo it's even more touchy, so I arrived hurting. Mr. Rosey wasn't feeling well, and there was around 30 people in the room. I don't do well in crowds ANYway, too many sensory issues there. I had wished just once someone would honor my wishes for a quiet weekend with mom!

I had my new denim hat on which was decorated with my big gaudy hair band flower. I got immediate positive comments on that. Then came the question that I dreaded and just KNEW someone in my family was going to be so gauche to ask.   It turned out to be one of my female cousins, "Can we see your head?"

I said "NO!" and walked away. 

Some of the boys were asking "why...come on...whats the big deal. Its just a bald head."   

Seriously? Can people really be so classless? My cousins aren't children! The youngest is 35! It really bothered me.

I was shocked by mom's appearance. She was thinner than she was just a month ago when she came for my surgery. :( She said she hadn't lost any weight. I told her then she had lost muscle mass . Her weight was probably stable as she lost muscle she gained more abdominal fluid. She wasn't yellow which is good. But she looked like one of those little dried apple people? More wrinkled, dark and knarly. sigh. She's so frail and I should be there. I'd like to talk to God about this timing.

She was so exhausted she went to bed within 30 minutes after I got there. She was so achy she took 2 sleeping pills to make sure she fell asleep.

Finally the cousins left and it got a little quieter. I had a nicer visit then with my sisters. 


Next morning I was up first and brewed coffee. That brought mom out. So we got to chat about my treatments. She lectured me about my meds and treatments and recovery in general. We talked about the American Cancer Society and all they were doing for me. She was happy about all that. Like I'd said...we'd been donating all these years and didn't know what they did with the money. Now we know a little better.

We left late afternoon, and today its just us. K grilled ribeye steaks and we had corn and shells n cheese...probably our favorite bad starch. lol

Becky brought me another card. It said...if someone asks why you wear a scarf on your head...tell them you are a pirate and then GROWL at them. We laughed and laughed. She had planned to send it later but after the cousins hassling me about my head, she couldn't resist. 

Some people don't see eye to eye about how I deal with cancer. Some people think I need to be dancing and praising God. I think this is one of those times where I am content to let Christ carry me through it. If I think too much about the cancer and what's ahead I get scared. I decided God doesn't want me afraid. So it's okay to take it day by day and let him carry me through.  I have another family member who thinks I don't have enough to do....she's asking me to help her plan a wedding. *roll my eyes*

It's a busy week ahead....getting my hair, taking the Look Good class.

Maryland Crab:
Glad  you had a good time.  May I ask who on earth asks a woman going through chemo to work on a wedding?  Who prey tell who?  I'm floored by that.  And I say whatever keeps you going with your chin up is what you do.  Don't let anyone else dictate how you deal with all of this.  I'm happy you were feeling well enough to go. 

Rosey:
Becky scolded me..why in the world did you let her talk you into this veil thing. Well it seems this family member can't relate to me on just a supportive role. She doesn't seem to have a clue how to be encouraging. It's like she thinks she;s being supportive by asking me to do stuff FOR her. So I was like hey...maybe if I do the veil she will stop asking me to go bra shopping, decorate wedding cakes, or create the flowers. I can do this and be done. Let's all hope that okay?

Shelley:
Glad most of your visit went well. Sorry it got off to such a rough start. You are handling all of these different situations with such grace. You're my hero. I will be praying for you and for your momma. Hope you had a great Labor Day weekend.

Thursday, March 7, 2013

Pink Ribbons ~ The Robbery


Pink Ribbons is a feature series I have started that is posted every Thursday.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.   This is me sharing with you from the other side of breast cancer.

These are not current events, events are from Sept. 2010


Karen Cobb Thats probablly the worst part of the whole deal sorry!

Shelley Rea Crouch This is a tragedy! Surely there is a med to alleviate this side effect! Oh dear.
Emily Smith Oh that is sad! Well, maybe that would help millions of people fight their food addiction. Lol

Paula Jennings Oh no! That is the worst news I've ever heard! This must be the part where it appears that Captain Chemo is working for the dark side Hang in there. I think I've heard the end of this story before...God Wins!

Susan Whittington Pittenger I guess "Sees" will have to wait until Captain Chemo defeats the real enemy! Love you Tina. Card in the mail

*A metallic taste is a common side effect of chemo.  Mine lasted about 4/5 days and Banana was the only flavor that could break through.