Showing posts with label Bilateral Mastectomy. Show all posts
Showing posts with label Bilateral Mastectomy. Show all posts

Thursday, January 24, 2013

Pink Ribbons ~ Naked Beavers!

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.   These are not current events.  This is me sharing with you from the other side of breast cancer.



Ok. Now this may fall under the catagory of TMI. But I have taken on the task of educating you about breast cancer and treatments. So think about the title and decide if you want to continue.




So early in the morning I had wakened and felt the need to scratch the pubes. And I wound up with a handful of hair. :eek So I got up (had to pee anyway) to investigate. I found I could grab pubic hair and it pulled right out. It did not hurt, just a tugging sensation. When I stood it looked a spider drowned in the toilet.

Now the funny thing is all the hair is from one side. ***snort**giggle *** So I have a half bald beaver! 

Here it is the end of summer and I finally have an easy bikini cut!  Apparently the hair on my head is not the first to go!  I knew that ALL hair was susceptible but thought it would happen all at the same time.  But apparently public hair goes first.

I keep swiping at my arms to see if that hair is ready to bail. Its still pretty tight. Chin whiskers are hanging pretty tough. Legs seem a little less prickly and the hair is definitely thinning. Bring on those chemo caps! 

Yesterday evening we went out driving and I wasn't wearing a cap. The windows were down and blowing my hair and you could see strands of my hair flying like dog hair. KJ commended that I was shedding. I see the Wig guy tomorrow evening and I suspect I will be balding by the weekend. So I'm clippering it down on Wed. I'm saving tufts of hair to tape to my head. ACS said many women are self conscious wearing caps that there's no tufts of hair hanging in front of the ears.



You can actually BUY tufts to tape in front of your ears. So I decided before the hair abandons ship I will cut my own tufts and put them to work!  For more information on hat hair go to 
http://www.tlcdirect.org/Hats-with-Hair-for-Cancer-and-Chemotherapy-Patients-Hair-for-Hats-American-Cancer-Society-TLC-Direct

TMI - within 48 hours, it was like I'd had a Brazilian bikini wax.  Not even stubble.  THIS I could get used to...hairless with no hair removal pain...scratch that.  Chemo is painful.

I shaved my legs last week and I still don't have stubble.  Now waiting on the head I guess.  This is day 17...

Thursday, January 17, 2013

Pink Ribbons ~ Dr. Joe Explains the Bone Pain...

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.   These are not current events.  This is me sharing with you from the other side of breast cancer.


Monday I saw Dr. Joe. My blood values were through the roof. I had told them about my bone pain and how it felt like my spine exploded. He was not happy and said I should have called. I gave it a 9 on the pain scale and told him that MY 10 means I'm screaming in pain...which has only happened once in my life. But I was crying out and sobbing so it was a 9.

He left and came back with my lab results and said "this was the reason for your pain."


The neulasta injection is SUPPOSED to stimulate the bone marrow..which is where the pain comes from. He said "Well Tina, we sent yours into overdrive!" A normal high wbc count is 10.4. Mine was 37.8!!! Three times normal. My percentage of immature blood cells was 33.3 and high normal is 6.5!!

He told us that it's a gamble sometimes. He can't know which patients have good bone marrow and which ones don't. He said I had REALLY good bone marrow. So this next chemo which is a week from Friday (sigh) he's NOT going to give the me the Neulasta injection and then watch how low my blood counts go. I go in for a lab draw on the 20th. IF it's fallen below normal he may give me a 25% dose. He said he can always give a little medicine but can't undo it once I have it.  He guessed because I was SO YOUNG, my bone marrow is still working well.

He believes the muscle pain is from the chemo, as was the fevers. He can't reduce my chemo dose and I told him I did not want him to. I can tell myself the chemo is hurting me but doing its job. If he reduced it just to make me more comfortable, there's no assurance its strong enough to do the job.

It IS harder to face this next dose, because that I KNOW what's coming and I know how bad I will feel. But I even still I wish it was this Friday instead of next Friday. Kind of like "get the show on the road."

But I am enjoying some good days. I tire easily but find I can do light housework. I did dishes, swept and vacuumed the living room! I made my bed and even cleaned the toilet! I rest 30 minutes between chores and find I can do light housework.

I'm in the Nadir period of chemo which is a fancy medical term meaning the "off weeks".  Really it refers to the effects of chemo on the cells in the weeks after the dose. Normally they would be at their lowest cell activity. Mine are not because of that shot. But because mine are so high he gave me clearance to go see mom. Just using normal chemo precautions, I am to avoid children.  *sad*  Nurse Robin said that children are walking "petri dishes" of virus' and germs.

So we plan to drive out late sat afternoon and come home around noon Sunday. Mom is having bladder surgery...she hopes by the end of Sept. It's a situation where she may not survive. HER blood levels are poor. She's anemic, has low wbcs and very low platelets. But we all gave her permission to die. We know she's miserable right now. The surgery will improve her quality of life. If she dies seeking a better quality, we are at peace with her choice. Living like she is now...isn't life. But at the same time I want to see her before she takes that step.






Linderlou:
It's so great that your doctor is on top of things. He sounds absolutely wonderful! I am praying that your pain becomes more manageable. It must do your heart good to be able to do a bit of housework because your personality is not that of a couch potato. I hope that resting in your lovely chair in between is helping.

MarylandCrab:
So you have super hero bone marrow!  Makes me think you've got super hero healing properties too!  I get the dread of waiting for the next treatment, not sure how to help you not dread it, but I'll be in prayer for you to have some calm about the next treatment.  And I'm sorry to hear about your mom, I'm sure this is tough on all of you.

Thursday, November 29, 2012

Pink Ribbons ~ Discussing the "Girls"

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.   These are not current events.  This is me sharing with you from the other side of breast cancer.


August 2010

Well, we bought a recliner. I spent more than I thought was necessary but Mr. R was persistent. This puppy is soft and it is a Cadillac model as well. I mean it has massage and heat as well as a mini cooler. Okay the cooler is basically an insulated well with these ridged chillers. You freeze those and slip them in the well along with my protein shakes and the only reason to get out of it will be to use the toilet.

I balked a little at the price. But Mr. R is aware of my fears about bone pain. He sold me with "consider how that heat and massage will feel if your bones are hurting." And it was something to consider. K told me that I needed some comforts as well as a plain recliner. So it will arrive Friday morning before I leave for the chemo appointment.

It was bittersweet buying the recliner. I mean the salesmen wanted me to be excited. But it was hard when you are buying a recliner because the chemo center tells you a recliner works best for people coping with chemo.  I wasn't just buying a recliner for the world series. I'm getting this to help me recover through chemo and a half dozen horrendous scary surgeries. I'm glad to know I will be in the lap of comfort but I couldn't muster up the will to do a cartwheel for the sales crew. I finally told them I was getting this to help me recover and they quieted down about all the "Aren't you excited? My husband hasn't bought ME a recliner!"

My shoulder is in spasms again. There must also be a nerve very close to the port. With arm movement I get a zinger that moves from the port area down across the shoulder. I was ready to come home and rest again. I still feel like a wienie.

Got a letter from the insurance company. They graciously agreed to pay for the big expensive injections I'm getting. One to prevent nausea....that's $400 but they apparently cover at 100% under major medical. The other...the Neulasta is the bone marrow medicine that is supposed to cause the bone pain - its $1500 at retail. But apparently it too will be covered as major medical.  Thank the Lord for Insurance.

The nutrition stuff with chemo is a little overwhelming. They over stress the importance of protecting yourself from infection. I can't eat at buffets or salad bars. Where I might be able to fight a little bug from unwashed salad pieces or the tomatoes that didn't get washed well, on chemo I can't. So I have to buy processed salads not fresh deli. They suggest no deli at all in fact.

Eating out isn't even easy. I mean the guidelines say to insist that hot food is hot and cold is icy. No medium rare meats, no mayo or dairy based foods. This is gonna stink! I had another word in mind but in diffidence to those of you who don't like crude words...I'm avoiding it. But boy I'm thinking it. Something about this experience is bringing out the potty mouth in me.

Although I still feel modest. They said they will spray the port area down with a freeze spray and I'm thinking...they don't expect me to expose the girls do they? I mean yes... I am getting rid of them and building new ones but for right now...they are still mine.

I was reading a user manual on breasts and found interesting stuff.

The author hates self breast exams as promoted by breast cancer advocates. She says....it's a "fear promoting hunt for cancer" that every woman who does one, does it in self loathing. Instead, she believes women from puberty on should be taught simply to know their own set of breasts. It's okay to touch them without "hunting for cancer" and feeling sick that you might find something. I know I was that way...doing the exam almost haphazardly hoping I would find nothing.

The whole self exam was created by a doctor a couple centuries ago because women were taught it was "nasty" to touch down there...and "down there" meant anything under the chin. So they would finally go to a doctor so riddled with cancer they couldn't ignore it anymore. The doctor came up with the self exam as a way to satisfy the puritanical need to avoid sexuality by making it only a medical exam. It's okay to touch your breasts this way because it's medical....not sexual.

So she believes that our daughters should be taught to examine their breasts...not to look for cancer. From puberty they should be taught to understand what was normal for their breasts.  Then knowing what was normal they can identify changes that don't necessarily mean cancer....but that something changed and  it needs to get checked out.


It wouldn't make a difference to me. Although it does frustrate me that so much emphasis is placed on breast LUMPS. 20% of us have a cancer that doesn't grow lumps. I DO think its interesting that in the early spring or so that I noted to KJ that I wasn't aware my right breast was hanging so much lower than the left. Had it always been that way? He didn't know. Now I find out there's cancer in that one and I can't help but wonder....was that realization a recognition that something had changed?  But I did not know this change in appearance was a sign of lobular cancer.


So what do you plan to teach your daughters about their breasts?

Meeshia:   I am being honest here (don't throw anything at me), but I very rarely have ever done a breast exam.  I guess it is because no one in my family has had breast cancer (lots of other cancers) but not BC.  So, I do it whenever I remember.  So maybe this will be a good time for all of us girls in my house to take some time to really get to know their bodies.

Rosey:  According to my book 70 - 82% of breast cancer diagnoses are those with no family history. It's truly sporadic as to who gets it and when. The other group of women know they are at risk and look for signs. Thus they are more likely to find them earlier than someone like yourself, who mistakenly believes they aren't at a high risk to develop cancer.

My only question for those like yourself or other moms with young daughters, would be how to explain what is a "normal breast". I couldn't recommend this book...Dr. Susan Love Breast book. Mainly because while it does talk of what is normal the majority of the book is about the abnormal. Which as a teenager it would have been ripe data for an overactive mind. I would have read ahead and scared myself. But not all girls would have been as bad as I am.

Tracy:
I've never done an "official" self exam because my breasts are lumpy and it freaks me out. HOWEVER, I do know what is normal for me and what is not.  The left one has always been bigger, etc etc. I do believe I'd know if something was "off". I got to know the girls very well while nursing. I had a lot of infections and plugged ducts and was feeling up myself a lot back then   My ob/gyn actually advocates what you do~knowing your breasts enough to know if something is wrong, but not necessarily doing an official "exam".

Rosey:
I don't know how I would teach a dd how to "know her breasts". Mine have always been nobby and when you press in on the tissue you feel all those nobs and bumps.

Did you know once a woman has breast fed a child she is capable of producing milk at any other point in her life? Once we have breast fed we continue to have circulating prolactin. If you squeeze or suckle the nipple, we release oxytocin which will increase the prolactin production. If you increase it enough you can continue to lactate for years. I knew that but don't think I realized it was so easy. Dang, I could have put K to work.....make me lactate and use up those ice cream calories! bwa ha ha...wouldn't that startle our dh's!  Not to mention some companies out there pays good money for breast milk to sell for sick premies.  Or you can donate directly to a NICU after you are tested.

Abeybabymama:  That must be how they had wet nurses back in the olden times. That seems so odd now to think of someone else nursing your baby.

Wednesday, August 8, 2012

Pink Ribbons - The Day They Said Cancer


Although I have had a separate blog for Cancer posts, I have found it difficult to organize, post and update 2 different blog sites.  So my decision is to integrate those journal notes into Through Rosey's Glasses as Pink Ribbons Posts.  I will also link these posts to the page here Rosey,the Pink Warrior!  So note, if a post is labeled Pink Ribbons, the topic is breast cancer and my experience.  Right now the plan is to release another part of my Pink Ribbon battles every Wed. morning.  When I was diagnosed I wanted so bad to talk to women who fought and made it to the other side. I wanted to know if what I felt was normal, were they afraid?  So here I am on the other side of treatment, and I'm talking to you... the newly diagnosed and those who love you


I walked into a routine mammogram this afternoon.
 I walked out with breast cancer.






This was the message I posted on 7/27/2010 to my online friends of more than 10 years (the WOW girls) . This is the text that I copied into my journal that night.

The radiologist was certain of the diagnosis. But she did a breast biopsy as well to confirm. I also have enlarged lymph nodes in the arm pit. They were biopsied as well. The next step will depend on whether there is cancer in these lymph nodes. If there is I will most likely have chemo first then surgery. Otherwise I will have surgery. She did think that it will be a lumpectomy. But I was already looking ahead and telling myself "No Lumpectomies.  If this is cancer, I'm having double mastectomies.  And if it's NOT cancer I'm still having mastectomies."

This breast biopsy isn't the worst thing but its no picnic either.

Image of cancer tumor on
mammogram.  Not mine though.
I should get confirmation on Thurs afternoon. She already asked for my surgeon's name. Hopefully we can move forward quickly. But seriously do people have a list of doctors in their heads? I have used a surgeon before, but where or how do you look for an Oncologist?

My mind is still spinning around wondering how can I take care of mom? I told her I would stay with her so she doesn't have to leave her home as her condition deteriorates. I don't know what will happen if I can't take care of mom. KJ is stressed with his new job and I need to be able to help him. Now he's looking at having to take care of the house and laundry and meals.

We are NOT telling my mom or sisters. And we are waiting til the pathology report comes in before telling James. Knowing whether it's spread is a major factor in what comes next.



*What's next?  I will be sharing the actual events of the "Day They Said Cancer" in the next edition of Pink Ribbon.








Link to next Pink Ribbons post -
#4Scared
#3Am I Going to Die?
#2When They Tell You, You have Cancer