Sunday, June 10, 2012

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

Meeting Dr. Joe Muscato , Medical Oncologist



Okay we loved the oncologist. I'm to call him Dr. Joe. He's 60 something, and his wife is an oncologist as well. His wife is Dr. Mary because it was too confusing to have two Dr. Muscatos in the same practice. 

Robin is his nurse. She's a cute spunky woman 40 or so. She told me I will never have to suffer through anything. If a med they give me doesn't help my side effects, they will move on to the next. I'm to call them even at 2 am. She said the horror stories of vomiting out the gum you swollowed in second grade...doesn't have to happen if I take the meds and communicate my needs and side effects to them.

I only have breast cancer and the lymph nodes. No other place in my body lit up with cancer per pet scan.

Ct scan showed something on my spleen but it's not cancer. So I will have them find out if it’s something else that needs to be removed. Oncologist is satisfied it's not cancer but I worry it might be something else that a surgeon would want removed.

I start with chemo, 12 weeks of it. Every third week, I will have a dose of chemo on the Friday at the end of the week. 1st week is worse. 2nd week is better but I have to avoid people and crowds or wear a mask. Hmmm... yeah that doesn't screech "look at me! at all." The 3rd week I will feel more like myself and may be able to visit mom. He told me I will not be able to go to moms and clean her house from end to end. We won't have marathon shopping trips. But I can spend quiet days with my mother enjoying her company. I was afraid I'd not be able to spend time until this was over.

Then it all starts over. I am choosing Friday for my chemo day. And it will take all day to get the chemo. KJ will be coming with me.  Then he will be home with me on Sat and Sunday, which they tell me will be the roughest days.  The drugs I will be given will cause hair loss...nausea...lack of appetite...diarrhea and crushing fatigue. Dr. Joe told me, I will feel like a Mac truck fell on me and I will be content to leave it there. :) Lovely. I have to take a chemo class and be tested on my knowledge before I can start. But it should start in the next two weeks.

I will have three, possibly four surgeries. The first one should be this week.  I have awful veins for starting IV's so I'm having a port installed.  Probably next Thurs. but I gotta call Monday morning and confirm. Then I will have the mastectomy. I want an immediate reconstruct and Doc Joe said I could, but it will be up to the plastic surgeon whether he does it in the same surgery as mastectomy. I have to have an axillary dissection because of the involved lymph nodes and sometimes plastic surgeons are hesitant to do reconstruction with all that on the same day. I hope he will. We are also doing a complete hysterectomy, ovaries and all at some point. The gyn will NOT do that the same day as the mastectomy. I would rather have ONE massive surgery and recover at once. They want three copays (as in the hospital I mean).

So much for quick hmmm? All copays have to be paid in full before the hospital will schedule that surgery. Apparently the hospital had people getting these massive surgeries that they really needed, to save their lives. But darn it, they couldn't afford it and declared bankruptcy after they were healed of their cancers or such. So now this loving Baptist hospital considers cancer surgeries to be elective...(guess cause you can choose to die instead). And elective surgeries have to be paid before surgery will be done. Whew. Of course emergency surgeries they have to do and try to collect later.

I may have to have radiation, but maybe not. It will depend on how many lymph nodes have cancer. They believe there are three but they are not grossly abnormal. He said the axillary felt normal but we know it is not, because of the biopsy.

The best information that Dr. Joe gave me in this visit was a very simple statement.  There is no wrong way to do cancer.  You get through it however you find a way.  I would recall this statement over and over as people fell over themselves trying to tell me how "to do cancer."  You have to "stay positive"..."rebuke the cancer"..."eat lots of blueberries"..."stop using artificial sweeteners"..."you must rejoice in adversity"..."pray your way through"..."journal your journey"...  It got exhausting to feel like you had to do cancer the way that made THEM feel better.

I told him that I had been upset that I should have gotten the mammy in Jan and didn't cause of Mom's diagnosis. Then in May I was to have it scheduled, but there was a scheduling conflict with the hospital and then I forgot. So I was late getting my mammy.  He told me. "Tina, this cancer is very hard to detect by mammogram. Usually its because of some physical change..pain in the breast, the nipple retracts, a dip or dimple appears or suddenly the breast looks larger than normal. Your cancer showed up on mammy extremely early for lobular cancer and I doubt it would have shown up even in May. He said "You had the good fortune to schedule this mammy on a day the cancer decided to show up. I can't explain how it showed up even now."

Sniff.

Okay girls WHO do you think really scheduled this mammy EVEN if it was on my wedding anniversary? It was not just Good Timing. It was God timing! I could have gone another year thinking I had a clear mammy while this kept growing.  I think I should have new boobs around Valentines day and by Easter I will feel good as new.  Oh.  Did I mention the Radiology doc was not correct.  I have Lobular cancer, the same kind as moms.  :(  I learned that lobular cancer doesn't lump up.  It SPREADS out and adds bulk.  It is harder to feel.  Isn't that special?  All these years of doing self exams looking for a cancer lump and I get the kind that doesn't lump.  The descriptions Dr. Joe gave is how most Lobular cancer is detected.

Sally:  Well as awful as this is, I am so relieved and thankful.  So glad you don't have cancer anywhere else and getting the hysterectomy should take care of the family history of Ov. Cancer, right???   So glad you don't have that!  I was so afraid your pet scan would be lit up, too.  That is amazing that they discovered your cancer.  Yay God!!!!!!!!!!!!!!!! I'll be praying the chemo isn't as bad as it could be.  I'm glad KJ will be able to help you on the hardest days.  I wish we could all come down and help you out!!

Danica:  Yeah what Sally said...when you are feeling up to it ms. Rosey.   I expect you to write a book on this whole experience. i'm serious. You have an amazing ability to take someone right to that moment. butt cheek boogie...my word! Coffee flew onto the screen!  i too wish were there to help you in a physical way. know we are praying for you!!! :)

Paula:  Praise God for exposing the cancer "at the right time".  Yet another sign that God is in control.  {{Tina}} Take care of your "cheek boogying" self.  Description: http://img.photobucket.com/albums/v423/tracy1973/hug.gif

Linder: Exactly what Sally and Danica said. I fully expect you to write a book, too. You've just added a new phrase to my repertoire: "butt cheek boogie." I laughed so hard that I cried. I had to stop reading for awhile because I couldn't see to read the rest of the post.  Someone from my church is a breast cancer survivor. She's a funny lady, too. The title of her book is Lessons from a Bald Chick. I wish like anything that I could afford to buy it for you. But you could write a book yourself. It would help others that will come after you through this journey

Maryland Crab:  Another godincidence!  I'm glad you got through it, I hate those mri machines, I nearly had a complete meltdown when I had to get one, I thought if I weighed 5 more pounds I wouldn't fit.

I'm so glad you're having compassionate care throughout all of this.  12 weeks.  Well, certainly no picnic, but that means how many times, 4?

Okay, line out the time table, are you getting the surgeries while going through chemo?  It's the port install first, then your first chemo friday... then what?

Still praying.

Rosey:  No surgeries during chemo. In fact if I had not had the arm pit involvement of lymph nodes, they would have done surgery first and then radiation.  Incisions don't heal during chemo and they want to attack any cancer cells that might be loose before they can land anywhere. It’s unlikely that I have circulating cells because even though the biopsy was positive in the sentinel lobe - the lymph nodes are not hugely enlarged. They are "upper limits of normal". So Doc Joe doesn't think it's been there long. Yes...four courses or approximately 3 months of chemo. Then I have to wait til my blood levels are normal. When my blood tests show I'm no longer radioactive ;) they can move to the mastectomy.

It gets trickier here. If I'm still relatively healthy and if the main surgeon and the cosmetic surgeon will play nice, I might be able to have the mastectomy and the reconstruction at the same time. I guess there are territory issues here. The gyn and the other surgeons apparently do not play well together. I asked about one massive surgery and he raised his eyebrows. Have I told you this or was it my sister? He said that would be a horrendous surgery and recovery. I told him yes...but it was ONE horrendous surgery and recovery. Instead of three. It was like the difference between bobbing a dogs tail all at once or doing it inch by inch. ouch

He told me IF I found three surgeons working together we could discuss it. And we had 5 - 6 months to find some. But that I should keep in mind that I could be talking 3 surgeries 6 weeks apart.

Does that make you feel tired?  My last chemo SHOULD be early November. If I have to wait a month for the blood to clean up...I have to decide if I want surgery right before Christmas and have to recover through the holidays OR wait til early Jan for the chop and shop.

Fighting Cancer gets easier 
when you trust your doctors


Butt Cheek Boogie!


August 8, 2010

I'm sorry, I thought I was going to be able to send out the highlights last night by text to be posted on the bb for me.  My phone is basically dead and I have to get moving quickly on something here at home. But I will post highlights and add detail or ask questions.  KJ and I have to get the house ready for chemo and move some furniture today. Here ya go.




Pet scan - traumatic. For someone with slight claustaphobia anyway. I was tied up with sheets to immobilize me and then conveyered into this three feet wide tube. augh. This fellow in the photo is not cold.  They wrap and tie and pin you to that table.  Actually the reason is so you don't move during the scan.  They mummy wrap you and tell you to RELAX!  But when you do relax your muscles, you find you are so tight inside your mummy case, that you don't have to struggle to remain still. Your arms and legs are supported in position by the mummy wrap.  Inch by inch that skinny table you're lying on moves through the big donut.  

At first I had to pray.....Lord don't let this squeeze me to death. I kept repeating under my breath, "My father does not give us a spirit of fear. My God did not give us a spirit of fear.  My God did not give us a spirit of fear..."   It helped and once the thing moved and my head cleared the tube structure, it was better. If you tell them you have any claustrophobia at all, they send you in feet first so your head comes out first. Then I was okay.




There was music in the background...50's, 60's classic rock and had to keep stopping myself from booging with the music.  At one point the Dude (Mike) asked me  "Ms. Rosey?  Are you flexing your buttocks?" 

Gee is my face red?


"Ummm yes Mike. I'm afraid I was doing a butt cheek boogie to the music".

Who KNEW they would see that?

I heard at least five people in that glass cubicle erupt into laughter while Mike got on the horn...laughing mind you... to tell me to try to control myself. As I left, Piper showed up to tell me I could butt cheek boogie on down to the waiting room where my husband was waiting. Will I ever live that down?

-----------------


Fighting Cancer gets a little less scary
 when you find something 
to have a gut busting laugh over!








Tests Tests and More Tests


August 5th

So Mandy from Dr. Etters office called to set me up with a Pet scan. I had to be on clear liquids from that point on. I asked her about the fact I had already taken my diabetic meds. Without food I would be crashing by 2 pm. She told to tell everyone that I was diabetic and would need food as soon as I cleared the exams I needed to be NPO for.

My friend Joyce drove down 30 miles to take me to the hospital...then 30 miles the other direction.  She is such a joyful help!   I told her about you guys and your pink bracelets and she teared up. She wiped her eyes, exclaiming "that is so sweet! I want to wear your bracelet." KJ later said "I guess we are buying a lot of bracelets."

So first I met Piper in Nuclear Medicine (or is it Nucler medicine if you're from Texas?)  Piper was the technician who would draw my blood, mix a radioactive isotope into it and then re-inject it into me. I asked if I needed to take any precautions, toileting, microwave ovens...spider bites anything at all? She laughed and told me I was fine. It was the "nucler terrorist" who put out warnings that my urine was radioactive or that I would glow in the dark until I passed it through.

Piper told me she was 4 years out from her own cancer diagnosis. She couldn't tell me I would be fine but that I will be given the best fighting chance. Both she and her dh were diagnosed with cancers on the same day. Friday the 13th. (Can you even imagine?  Forget it's the 13th!  Let's talk about ON the SAME day!) She said they are not superstitious but they confess to getting anxious every Friday the 13th. :) She introduced me to Steve, a ruggedly handsome man who would be doing my bone scan. I was relieved to be told I did not have to disrobe for any tests...unless I wore Madonna's metal bras. (No worries there, although there have been times I've thought I needed one to hoist these girls up where they belong!)   Steve was that handsome cowboy, rock climber, skier look kind of guy.



photo courtesy of
http://www.roblangimages.com/




He had one of those althletic builds that came from real activity, not just strutting around in a gym. He actually DID physical exercise...well based on the width of his shoulders.  (This isn't Steve, but this was the kind of he handsome that was.  I'm grateful Steve was fully dressed.  I couldn't have taken this for a 30 minutes scan) I would have to wait two hours before Steve could run my bone scan.  That is to give the isotopes time to absorb throughout the entire body.  I laid on the table with a plate running over me. He had one of those thick dark molasses syrup kind of voices.  And when he said "Tina can you twist your head to the right?"   I thought "Steve..speak to me in that voice, I will twist my head upside down." :)





So in the meantime I'm sent up to CT scan waiting area where I must wait for the next 1.5 hours, I had to start drinking contrast mixes in a strong concentration of raspberry crystal light. So strong in fact, I am quite certain my teeth are still purple tinted. Steve left me in the care of Kathleen. She was a magnificent black woman with awe inspiring hair. Her hair was perfect, finger curls dripping down from her scalp. I couldn't help but eye it and wonder how long it takes to reach a style like that.  It was similar to this chick right there  --> I recently had another visit to CT for another exam.  she did not have the magnificent curls.  I inquired about her curls and she began to laugh.  "Oh Child, that hair is a wig!"  Well it was a magnificent wig, I wonder if I could have pulled it off while I was bald?  lol   Sure enough, the next time I went in for another test, the curls were back.

She was informed of my diabetes and my need for food as soon as I could eat. She promised to keep an eye on me and had a single size apple juice on hand. She took my pertinent information and was very interested when I spoke about my lap band. I explained I could not guarantee drinking down the contrast in 10 minutes.  But I'd do what I could. She was very curious and asked a lot of questions. It was kind of fun.  It was nice to talk about something not related to cancer.  (Again, when I went back a year after this for another CT scan, a much thinner Kathleen was waiting for me.  She gave me a hearty hug and told me she had gone on and had a lap band procedure herself and had lost 50 lbs in 4 months.  Good for her!)

I was frustrated because I learned I was NOT having a pet scan. Insurance said "we won't cover a pet scan by itself. You have to have a CT scan and bone scan first THEN we will pay for the PET scan." What a racket. I wanted to call Kelly and let him know that little tidbit. My cell wouldn't work. Nuclear medicine is a cell blocked area. So I had to find a public phone to call him. But oddly that I couldn't call or text but I kept getting this message..."senior class for seniors 2010 requests to pair with you. Do you accept this pairing?" I hit no. It popped up immediately again. I hit no. For the next hour my phone was repeatedly assaulted by some pervy senior 2010 wanting to mate with my phone. It exhausted my phone. Literally. It sucked my cell battery down like a 10 cylinder engine sucks in gas.

So I'm sitting there waiting and someone walked into the room with great purpose. Most people moved quietly and reluctantly into this area. Not this man, so I could not help but look up. The words burst forth from my mouth..."Pastor Chuck!"  He stopped so suddenly he nearly skidded and whipped around and exclaimed "Rosey! How are you?"  I had to ask him, "How did you know it was me?  He laughed and said "because you're the only one left who still calls me Pastor Chuck."


Pastor/Chaplain Chuck

Chuck had been my pastor 13 years ago in a struggling church. He was the minister who said in a sermon "When someone extends compassion to you in your time of need, be grateful. For compassion is learned. It is born out of the personal pain in which we learn how to extend compassion to another." It was so powerful to me I have never forgotten those words.  He is a very special friend.  Our little church wasn't doing well and eventually the district and shut down our little church.  

So Pastor Chuck was looking for a job and I told him he should look into the chaplaincy full time. He asked why. I told him I had never met a man with a greater capacity for compassion and thought it could be God's calling on him. He applied at a hospital that week and was hired immediately. He's been there 12 years now. So it was Chaplain Chuck who walked into the waiting room.

He hugged me and asked if my diabetes was worse. I shook my head and took a big breath to say it out loud for the first time to someone who was not in the medical field. "No. I have breast cancer."

He turned white and gasped out. "So do we!"

Now isn't that sweet?  His wife J, a gentile woman now has cancer but he included himself in the process.  Later when I shared this with KJ and he nodded. He agreed that while I have the actual breast cancer it impacts his own life so intimately that he feels WE have breast cancer. He plans to use that terminology as well. If WE can be pregnant. WE can have cancer.

Chuck tells me his wife is a new diagnosis...Me too. She had a biopsy last Tuesday and was told immediately, they suspected cancer. Me Too! I told him it was our wedding anniversary and I had no clue there was going to be anything but celebrating going on. 

His wife, J is going to the same surgical group and she's seeing oncologist Mary Muscato. I'm seeing oncologist Joseph Muscato.  It's a husband and wife team. We both have our first appointments this Friday.  J was told to expect chemo first before surgery. I was told it MAY be before surgery.

 Chuck explained that she was told that doing surgery first required waiting 6 weeks for chemo to start.  The incisions had to be totally healed before doing chemo. So this weekend, I'm going to order a chemo hat.  I will need something to use before I get these precious handmade ones you are working on.

Since then I have learned how important 
it is to wait those six weeks.  I hear the horror stories
 of women whose doctors started chemo just 10 - 14 days
after a mastectomy or lumpectomy.  Those poor dears
 wind up with incisions that rupture, infections, or incisions
 that won't heal properly because the doctor rushed and the chemo
disrupted the immune system!

We are preparing for something to start soon anyway. Chuck was on his way to see another patient. So he hugged me and I told him I'd be praying for them and getting in touch with Jane since it looked like we might be "breast buddies". He said they'd pray for us and that was good. Praying for someone else helped keep us from wallowing in our own dirt. I thought that was poetic.

Kathleen brings me my next quart of contract to drink. I told her I was going to the gift shop. Big disappointment. It's remodeling and all they had was cards and flowers. Not a way to kill an hour, but I found my cell worked in the main lobby. So I called KJ and told him about Chuck and Jane.  And I got cold. I mean Really cold. My fingertips turned blue and felt icy. I kept looking around to see who opened an air vent and saw nothing. I finished the call and walked back to the waiting room and sat down. I immediately started shaking and chattering so hard, my feet literally were bouncing on the floor. 

Kathleen rounded the desk, took one look at me and said "oh honey, you are having a reaction! Hang in there I will be right back." Her comment made me realize I was shaking like KJ does with HIS IGG reactions.

This kind of reaction, called "rigors" is defined as the sudden attack of severe shivering accompanied by a feeling of coldness ('the chills') and is associated often with a marked rise in body temperature. It may be described by patients as an attack of uncontrollable shaking.   Enquiry should be made about:

  • Symptoms suggestive of local infection, particularly respiratory infections, urinary infections, biliary disease, and gastrointestinal (GI) infections.
  • Recent surgical procedures.
  • Any relevant past medical history such as rheumatic heart disease.
  • Recent foreign travel.
  • Medication and allergies.

Next time Mr. Rosey is getting infused and complains of being cold, I will understand how he feels. Kathleen came right back and started tucking these wonderful heated cotton blankets around me. I loved her in that moment. She told me I would be fine and this happened to some people. But it would get better. And it did. The bouncing reduced to jitters then shivers and then plain chilled over a 30 minute time frame.

Then TJ came out to get me. TJ is cute in a boyish way, he's chubby, friendly, and he laughed easily. He was medium in height and I couldn't help but notice he had his hair cut the same as my son's, a 1/2 inch buzz.


He took me back and pulled blood out of my iv to check the levels of contrast. I swear it was as purple as that raspberry crystal light they had me guzzling. TJ was also very curious about lap bands and as he injects this tube and that one he's asking me for details. I go to the scan room and was VERY relieved to see a short tube I had to go through. Perhaps only two feet in width as opposed to a long cylindrical coffin I expected from internet photos. Tj got me situated and starting running scans. Four in total.

But there seemed to be an eternity between each one. I'm praying "Oh Lord, please let these be clear. No cancer anywhere else. Please."   In my mind's eye,  I saw his monitor screen lighting up like Christmas trees while he shouted for Dr. House to "come to CT Stat!"   I could see all of Dr. House's crack medical team bent over the monitors asking each other.."What the heck is that?" as they pointed at the bright blobs on the screens.

When TJ came back out to start the IV flowing for more contrast. I told him...You know it's pretty terrifying how long it takes between pictures. He asked me why? So I told him, "because I'm terrified you're finding cancer from my nose to my big toes and you're in there consulting with specialists from all over the country."

TJ chuckled and shook his head. "No Rosey," he said..."95% of my time is spent on paperwork. Charting what I do and what you did." Then stroking his barely bristled chin he said to me..."It might be a good idea to let patients know that when I explain what will happen. At least to newly dignosed cancer patients anyway."  I agreed it helped me chase Dr. House all the way back to Hollywood knowing TJ was just doing non Hollywood type paperwork.

The ct scan was finished and TJ helped me back to the waiting area where Kathleen was watching for me. She held in her hands a box lunch and explained she had ordered me an express lunch and I was to sit and eat it before my bone scan. :) I hugged her, and whispered to her my thanks and told her that her care and compassion made this easier to get through. The poor woman welled up with tears, called me a "oh you sweet thang" and gave me another hug. Then she shooed me away.

In the hall way TJ grinned and with a sideways glance asked "where's my hug?"  "Ha!" I laughed.   I told him that Kathleen gave me heated blankets but HE took them away. He laughed and then escorted me back to handsome Steve in Bone scan. I did thank TJ for taking me the whole way or alas.."I'd be wandering the halls like a newborn fool." He asked what was the difference between a newborn fool and an old fool. I told him an old fool should know better and was just pitiful. A newborn fool was just clueless and confused.

Steve told me to eat the lunch. I was his last appointment and he would wait for me.

Now there is a trick to eating when you have a lap band. You have to eat slowly. If you eat too fast or too much you will yak it back up. So I ate half the sandwich and a couple of the baked lays. Then I reported for my scan.

I had overlooked another factor of at least MY lap band. It likes to burp.  I can't explain it scientifically. How I see it, is that food lodges in the lap band pouch and as it softens and digests a bit, pieces of food drops through the band into the empty lower part of the stomach.  My theory is that as the food drops a small amount of air/gas is floated up the pouch and into the esophogus. It's a tiny little burp that most people aren't aware of. But it happens constantly as the food mushes and falls.

I had not counted laying down for the bone scan. (Every photo I ever seen of bones, they all have been standing upright...except in that show "Bones", where they are in pieces around a room.)  So I had to lay there while rugged handsome Steve is moving in and out. And the lap band is gurgling, it's bubbling and I can't burp the bubbles up and out from a laying position. It's not long before Rugged Handsome Steve tells me we are done and unties my feet. (to keep them in one position during the scan). He helps me sit up and like a ricochet in the Grand Canyon here it came...bbeeeerrrroooooouuuuuppppphhhhh!

He did not even crack a smile but asked "Good lunch"? Ahhhh could you just hate that? I told him lap bands like to talk after a meal. He just smiled, nodded and took my IV out.  I think he was just humoring me.

No one had warned me that these tests would make me feel like my blood had been replaced with lead. Or that St. John and I would be inseparable for several hours as I eliminated those contrast chemicals.  I was only a block or two from home when the bubbling started a lot lower this time.  I duck walked to the door, but by the time I got in the door I had lost control of the mess.  (Contrast fluids CAN cause sudden, intense and projectile diarrhea.  Fun huh?)  Luckily I was wearing pants that contained the problem but a shower was a must have.  I tossed everything into the washer.  Then I curled up in a fuzzy blanket and for the next 4 hours I remained very intimate with St. John.  KJ brought me home some soup and when I got up...it was to go to bed.

I was in bed by 8:00 pm and it wasn't a school night.

It's finished. Well this is, but I have some venting to do. I have to get busy on something and I will pop in through the day to tell you about my "thoughtful one moment and then snarling butthead the next moment" hubby.   Oh and my sister who is so thoughtful to share with me how God is showing HER comfort in my health crisis. grrrrrr

Nell: Well Tina, while the topic is not a favorite of anyone here, you sure do know how to tell a story!! I find it interesting how God is bringing you and J together through this journey. I do pray this will be a blessing to all of you. I just love Kathleen! Will you see her again? When do you get all the results?

Paula: I agree with Nell. You can already see God's hand in this and that is such a comfort. Don't forget that when things get tough. (Not that they aren't already tough) It sounds like there are some amazing people working in that profession. I know for me, it matters tremendously how the doctors and nurses treat me. I'm so happy that you had a good experience. Rosey - Be thankful it was a burp and not air of another kind. hehe

Meeshia: It is always amazing to me that from the prayer perspective; we pray for God's presence and protection will be surrounding you through every step. And then to hear how He does provide that does nothing but make me smile and make my spirit sing. I suppose it comes from not being able to be there, that we pray specifically for those tender hearts people to be with you every where you turn. But to really hear that God is providing that (like I'm really surprised?) is totally amazing. It does not surprise me that God brought you to meeting your past pastor or that he brought tender hands and heart from Kathleen.


I can imagine you can write a book just on your lap band alone with all the strange thingof any of it! :) I'm sure that must add some comic relief in moments that could be much harder without the interruptions.  I'm sure that the waiting is what will get to you over the next few days. Do you know when you will have your doctor's appt. for them to give you the results of all of these scans? to be honest, I've read all your texts/posts but I can't remember if you did tell us when your next appt. was. I'm thankful that you talk to us and let us know what is going on. Thanks for making your fingers tired. I hope that it is soothing to your spirit as you type us updates.

Linderlou: While I hate what you're going through, I sure love the way you talk about it. I have a crush on Steve and I want to hug Kathleen. I laughed so hard when you talked about how your lap band reacted to your lunch.  I just love that God brought you back in touch with your former pastor and his wife. You'll be able to help each other through it. Maybe KJ is acting the way he is at times because he's so worried.  You're in my prayers, sweet Rosey!

Rosey: I understand what KJ is going through. He understood exactly what Chuck meant when he said "We have breast cancer too." We had several talks last night. K's been reading on the Susan G Komen site. One thing he got upset about was reading about the emotions and stages. The disagreement we had on Monday was over me not being "positive" enough. He said I acted like I was convinced I was going to die. I lost it because at that time I was terrified that I was going to die. Not necessarily of breast cancer…but of breast, ovarian, colon, uterine, brain and bone cancer all at the same time. I've been terrified. Now I've moved through that a little and accepting that is more likely that I just have breast cancer. But he was going on and on about having to be positive.

SGK website said theres no scientific proof that state of mind affects the outcome. It can make a difference in coping, but not survival. But he read that the pressure for the newly diagnosed to "Stay Positive for everyone else" causes more anxiety because they feel they can't even do breast cancer right. And we are letting loved ones down by not singing and clapping along with the breast cancer fight song. lol I had to agree with the article. I feel so much pressure to "have cancer the way they want me to". Then he read the stages of a diagnosis and we could see how I have been experiencing them. He spent a time weeping and talking through HIS fears, worries and boy howdy don't you know THAT was fun! But I needed him to do it because by hiding his fears from me, we couldn't address them.

Having cancer is exhausting
 with all the unknowns