Discussion with Panwalker

I have been reading and reading and reading and reading about Herceptin and Tamoxifen, the two drugs that the doctors still want me on after chemo and surgery. There is so much information out there- it make my head spin! I think I mentioned before that I told Dr. Panwalker that I should be the Poster Child for a "No Drug" Campaign. I really want to be off as many medications as soon as possible and not even take some if they aren't absolutely necessary. He told me, "we'll see". What he doesn't realize is that I am a Mother of four and I know what "we'll see" means. It really means... I have one idea and you have another and I will give it some time before I tell you that. Hah! I have him all figured out! LOL
After all my hours and hours of reading, I have come to the conclusion that they (the medical world) know nothing about cancer! OK... they know a whole lot but... nothing for sure or at least everyone has a different idea of the best thing to do. It's so confusing!
I did set up a special meeting with Dr. Panwalker today with the intent of telling him that I'd like to get off all the meds. He was surprised to see me until I started to explain my "No Drug Campaign" position. After a long discussion of statistics of re-occurrence and side effects, I have opted to NOT take Tamoxifen (even though I think Dr. Panwalker may be beginning to see me as a pain-in-the-behind patient). But I guess to insure Dr. Panwalker doesn't write me off completely- I will continue with the Herceptin for a little while longer. Perhaps until we leave for Colombia (we are still hoping that is happening) or until the end of the year? Which ever comes first. We'll see! There is debate in the "study" world over whether 9 weeks of Herceptin is just as effective as a year but not enough to convince my doc that I have done enough. Dang! I'm pretty convinced but also realize that I do NOT have a medical degree... However, I should like to petition that any Cancer Survivor should be awarded an honorary degree of some kind! LOL

Here's a few things I've learned that most people will never read unless you unfortunately ever get breast cancer. (I know... who has time to read everything I write, right? See... I have you figured out as well. LOL) So, let's hope you never have reason to read them! ;):

Herceptin

Trastuzumab (trade name Herceptin) is a monoclonal antibody that interferes with the HER2/neu receptor. (I tested positive for the HER2 receptor) Its main use is to treat certain breast cancers.
The original studies of Herceptin showed that it improved overall survival in late-stage (metastatic) breast cancer from 20.3 to 25.1 months, but there is controversy over whether trastuzumab is effective in earlier stage cancer. Herceptin is also controversial because of its cost, as much as $100,000 per year, and while certain private insurance companies in the U.S. and government health care systems in Canada, England and elsewhere have refused to pay for herceptin for certain patients, some companies have since accepted herceptin treatment as a covered preventative treatment.
Herceptin is an IV drug administered every 3 weeks for a year.

Herceptin Links

Here's some general information page about Herceptin:
http://en.wikipedia.org/wiki/Trastuzumab
This is an article from 2008 about a debate over whether Herceptin should be administered for 9 weeks or 12 months:
http://www.pharmac.govt.nz/2008/08/07/Herceptin%20media%20release%207%20August%202008.pdf
An article about the heart benefits of only doing a 9 week course of Herceptin:
http://www.cancer.org/Cancer/news/News/short-course-of-herceptin-may-limit-heart-damage
This one is way long and mentions tons of stuff:
http://www.aetna.com/cpb/medical/data/300_399/0313.html
I love this chart. It's a bit confusing but it's all colorful and has information on both ideas:
http://www.fmhs.auckland.ac.nz/sms/oncology/_docs/NZSO10_Poster.pdf

Tamoxifen

Some breast cancer cells require estrogen to grow. (I also tested positive for the Estrogen receptor) Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competitive antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor. Hence breast cancer cell growth is blocked.
Tamoxifen is usually prescribed in a pill form and taken for 5 years.
Tamoxifen Links
General information:
http://en.wikipedia.org/wiki/Tamoxifen
Talks about other drugs that inhibit tamoxifen:
http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp
A more pro-tamoxifen site:
http://www.chemocare.com/bio/tamoxifen.asp

Here's the reasons why I am opting to NOT take Tamoxifen. Keep in mind that Tamoxifen is used to block the estrogen in breast tissue- which I now do NOT have. (or may have 2% left)
The most common side effects of tamoxifen are:
increased tumor or bone pain
hot flashes
vaginal dryness
nausea
fatigue
mood swings
depression
headache
hair thinning
constipation
dry skin
low or loss of libido
And these are some side effects that I found of people actually on tamoxifen (not the doctor's recommended side effects but real people):
* chemobrain, muscle cramps, hot flashes, and night sweats
* I feel nauseated
* insomnia
* hot flashes- they are very severe, insomnia, irritability, depression. I gained 15 pounds.
* memory loss, bouts of confusion, unable to verbalize things that are so clear in a conversation or things that I see but just can find a word for it such as apple, car, Walmart etc.., of course hot flashes, lite to moderate vertigo, pain in my right calf but lately more in the left, a very uncomfortable feeling in my throat, headaches around my eyes moving up to my forehead and around and the list goes on.
* anxiety, headaches, making terrible and costly decisions, forgetting words (I have a big vocabulary), hot flashes and feeling sorta crazy and unable to cope
* Teeth problems- receding gums, infection resulting in teeth pulled
* Then AFTER getting off tamoxifen a few reported worse pain than when they were on it. This was the explanation for that- "What is happening is that you body is going through withdrawal from the Tamoxifen and at the same time, your natural hormones are flowing back with a vengeance. The flood gate of estrogen is now open! It should get better with a little time. Your body has to "normalize" itself, again, after all these years of blocking the estrogen. In the meantime, your body is relearning what the estrogen is supposed to do."
SEE??? NOT fun and NOT interested. Thank you very much!

Colombian Training @ FLETC

Brett just spent a week at FLETC doing a training for some Colombians that he will be working with if we move. He said it was great to meet them. Most of them only spoke Spanish so he got lots of practice using the language this week. He said it was pretty exhausting. [The kids and I are gonna be in big trouble, I think? Dang!] One evening, Brett took a big group of them to Walmart while he was down there. Actually he was going there and a bunch wanted to go with him. Too funny! Oh the things that we may end up missing if we actually ever go! Add Walmart to the list, I guess. LOL

Brett also got to visit with his would-be co-worker from down in Bogota. He told us to stock up on paper towels before we go. Guess those are really expensive down there. Who knew? But sounds like we will be getting lots of pedicures cuz they are dirt cheap. Yeah for us! ;)
I'm glad Brett had a good experience and made it back safe!

TEAM SHAY: Extra Appreciated Help

During our trip to UT, many people offered to come out and help after my surgery. It was so nice of everyone. We are very lucky to have such a great family! However, we didn't know what help we would need if any (and actually recovery was much better than expected). But then Brett had the opportunity to go down south for some training that had to do with our upcoming move. Yeah for him but that means he would be gone for an entire week. Not that I couldn't have muddled through but not being back on top of everything, a little help would be nice. So we contacted Lori to see if she would be willing to come take his place for the week. With it being the first week of school, we know it was a sacrifice for her family to have her gone. But it turned out to be so helpful that we hope they know how much we appreciated it.
Brett left Sunday morning. Let's just say... we had a long Sunday and Monday! ;) Then, the kids and I picked Lori up from the airport on Tuesday in time for lunch. The kids were so excited to have her come! Especially little Glory. Check out all the fun stuff we did together on our other blog- The post is called Glory Loves Lori . (http://snomaes.blogspot.com/2012/08/glory-loves-lori.html) Yeah for Lori!
In regards to my Cancer Journey though, Lori was a great help. It was such a blessing to have her here to chat and visit with. But not only that... it turned out to be a perfect week for her to be here. I think that I probably overdid it last week because I was way tuckered out! (Oh yeah and Aunt Flo came to visit so that compounded the problem) I ended up taking a nap everyday while Lori watched the kids for me. So nice! I was also able to get the kids off to and from school on their first days with out hauling Glory all over. Glory was in seventh heaven to have her own personal friend to be with! What a blessing! As if that wasn't enough, Lori also cleaned out my freezer. It was in great need of being defrosted but that would require me to lift and move a million things. Lori let me run an errand and go to lunch with my friend and when I came back- whoala! magically... a beautiful, clean, defrosted freezer! Yeah! Thank you! Thank you! I love it!

The week went by way too fast and we kept Lori up way too late! Sorry!. ;( Lori left before the sun came up on Saturday. She drove herself to the airport [we still feel a little guilty about this but it was sure nice to sleep in so, thank you for that as well, Lori] and left the van for Brett to bring home. (He came home by lunchtime) He felt bad he didn't even get to see her at all.
Lori-
Thank you so much for coming and helping us out this week. We loved having you here. You are such a kind, loving, Christlike example for our family! It was so fun to have the kids get to know you more personally. And I always love to chat with you! Thank you for all your service to our family and the sacrifice of your family to let us steal you for a bit! You are the best! We love you tons! Thank you! Thank you! Thank you!
Love, All us Seamons ;)

Business as Usual?

I am officially three weeks out from my bilateral mastectomy! Can you believe that? I remember reading blogs where they would write concerns before their surgery, the experience of the day [usually written by someone else] and then whoala a month has passed. WHAT? What happened? What have you been up to? How was the pain? What did you do? I need details people! Then magically that's exactly what I did. It must be an unspoken cancer thing. LOL [OK. Maybe I've written some things but it doesn't feel like it]
Regardless though, business is getting back to usual, I think.

* I am completely off any pain meds including IBprophen. My chest still aches once in a while but a hot pad at bedtime has helped. And it gets better everyday! Hallelujah!
* Brett is back full time to work. In fact he is out of town for a week. (More info on that later.) But he was so great to stay home full time for a week and then work part-time for a little after that. I am very lucky to have a such a great supportive Hubby! XOXO
* I am back to being Chore Master around the house. Once I was up and at 'em [since Monday is bedroom day I am guessing that was maybe by the 13th?], I told the kids it was time to clean bedrooms "Mom's way". I got a lot of eye rolls and whining. LOL
* I am occasionally trying to sleep on my side. I am a huge side/stomach sleeper. Fortunately, I have adjusted adequately at the back-sleeping thing with the aid of lots of pillows. But I miss my side and tummy! ;( However, every once in a while in the last week, I can prop myself just so that I can rest on my side. Anything rubbing against my chest is still a little irritating. Hope that passes eventually!
* Aunt Flo (my nickname for my Menstrual Cycle) has come back to visit. {Sunday, August 19th} And unfortunately it's the pre-IUD one! Which sucks! I had forgotten that this Aunt Flo was the reason I got the IUD in the first place. I think I lost more blood in an hour than I did in my whole bi-lateral mastectomy. Grrrrrr! and I know TMI! LOL Not sure what to do about this business! [I won't ever be able to have another hormone based IUD ever again! bugger!] Now Brett and I will have to be very careful because Fertile Mertile is back in business! Joy!
* I am starting to wear regular shirts. No longer am I limited to my 6 zip-up shirts I bought especially for after surgery. Little by little I have been able to lift my arms higher and higher even though it pulls a little and makes me nervous. It still is a bit painful but I have been able to put stretchy shirts over my head. I can pull on a sports bra as well. Although even wearing a larger size puts a lot of pressure on my chest by the end of the day. Someday that will go away as well, right?
* Finally, my Life Coordinator, my friends and long-distance family (Thanks Davis') have been so gracious to feed my family. But now I am back to making my family a hot meal for dinner all by myself. OK.. not really.. Luckily for me, my freezer is full of ready-to-eat/ just-heat-up meals for me to choose from. Not sure I will ever be able to go back! LOL But that in itself is BUSINESS AS USUAL!

My Lymphedema Fiddledee ID

A little extensive medical lesson for you:

Lymphedema is a potential side effect of breast cancer surgery and radiation therapy that can appear in some people during the months or even years after treatment ends.
LYMPH is a thin, clear fluid that circulates throughout the body to remove wastes, bacteria, and other substances from tissues. EDEMA is the buildup of excess fluid. So lymphedema occurs when too much lymph collects in any area of the body. If lymphedema develops in people who’ve been treated for breast cancer, it usually occurs in the arm and hand, but sometimes it affects the breast, underarm, chest, trunk, and/or back.
Why does lymphedema happen? As part of surgery, many people with breast cancer have at least two or three lymph nodes removed from under the arm (sentinel lymph node biopsy), [This is what I had done and according to the National Cancer Institute, anywhere from 5-17% of women who have SLNB develop lymphedema.] and sometimes many more nodes (axillary lymph node dissection). If the cancer has spread, it has most likely moved into to those underarm lymph nodes first because they drain lymph from the breast. Many people also need radiation therapy to the chest area and/or underarm. [Luckily I did NOT] Surgery and radiation can cut off or damage some of the nodes and vessels through which lymph moves. Over time, the flow of lymph can overwhelm the remaining pathways, resulting in a backup of fluid into the body’s tissues.

So what does that mean for me? I guess it means that I have a 5-17% chance that I could develop lymphedema sometime in the future (although most every site I researched emphasized the risk from SLND is very low) What are percentages for anyways? And what am I supposed to do about my 5-17% risk? It's almost comical how many percentages have been thrown at me the last couple weeks. Like I could ever keep them all straight and IF I develop any of the side effects of my treatments then isn't my personal percentage 100%. LOL Whatever, I guess! 

However, back to lymphedema... I did find this quote. It is actually about a person who has more nodes removed than I did but in all my research, it doesn't ever come straight out and say anything about the sentinel lymph node dissection so this will have to do.

"Anybody who has had axillary lymph node dissection is at risk for life, so follow preventive methods closely at all times. No blood pressure measurement, no injections, and no blood drawn from the affected limb—ever." -Saskia Thiadens, R.N. is a nurse and the founder and executive director of the National Lymphedema Network (NLN), a non-profit organization providing education and guidance to health care professionals and women affected by lymphedema.

I'm not sure now whether it was the doctor or my reading that made me aware of that fact. I do remember having to ask several times to get a NO LIMB bracelet in the hospital after my surgery before anyone got it for me. So, I guess I will have to double check that fact that I should be avoiding those things with Panwalker. Knowing him though he'll tell me "you're young" and only had a little bit of cancer and "you"ll be fine". LOL.

But since I thought avoiding things in my right arm was my responsibility to ultimately avoid Lymphedema , I went on a search for a medical alert bracelet to wear. My searching brought me to this fun website called  Fiddledee IDs. They supply medical alert tags and many options for wearing it. I just bought a very basic band to start with but I have big plans to make some fun bracelets to wear with it. I'm so excited! {I even added a touch of Spanish just in case we do make it to Colombia. So fun!}

Check them out at:  Fiddledee IDs 

OTHER Lymphedema Information:

Here's an article about the reason behind not having anything done to the affected arm:

No Blood Tests, Blood Pressure, I.V., or Injections in this Arm!

By Pat O'Connor, Lymphedema People Nov 1, 2004

Needles

Perhaps the foremost rationale for NOT allowing the use of needles in an arm with lymphedema is the threat of infection. Every break of the skin creates potential entry foci for bacteria. Because of the immunocompromised state of the arm any infection can and often does escalate quickly into cellulitis. These infections cause further damage to the lymphatics, thereby increasing the severity of the lymphedema.

Lymphorrhea (which is the fluid in the arm) is a protein-rich substance that provides excellent nutrition to any bacteria that might gain a foot hold in the arm. Once an infection has begun the excess fluid and any fibrosis of the arm tissue makes it tremendously more difficult to eradicate the bacteria.

Injection of Medicines

The doseage strength of any medicine injected into the arm will be diminished for two reasons. First, because of the fluid accumulation in the arm it is going to be immediately diluted. Following that, because of the impaired fluid outflow of the arm, the medicine will have a more difficult time reaching the remainder of the body system.

IV's

The first reason for not allowing an IV is simply the break in the skin - which would be a continous opening until the removal of the IV. Beyond that and even more important is the simple fact that lymphedema is caused by the inability of the arm to remove even the normal excess fluids of body dynamics. When you add the fluids that are present in the administration of an IV, you catastrophically overload the arm. It simply is totally unable to rid itself of that extra fluid thereby causing a substantial increase inswelling.

Blood Pressure Tests

The danger of having a blood pressure test on an at-risk arm or an arm affected by lymphedema is that the squeeezing involved can cause possible further damage to already fragile lymphatics and blood vessels. If this occurs, it would cause worsening of the lymphedema.

These are common sense approaches that any physician should be immediately aware of.

Here's a few of the early signs to look for: 

Swelling in the arm or hand

Feeling of tightness, heaviness or fullness in the arm or hand

Feeling of tightness in the skin or a thickening of the skin

Pain or redness in the arm or hand

Tight fit of rings, watches or bracelets

Sleep problems

Here's other things to help reduce the chance as well:

1. Protect your skin.

2. Protect the arm and hand from extremes such as overuse, excessive pressure, or extremely hot or cold temperatures.

 3. Work with a lymphedema specialist to develop a gentle exercise plan for strengthening the arm and upper body over time.

4. Lose weight if necessary.

5. Know the signs and symptoms of lymphedema and get help for them right away.

And some helpful links:

This site is really extensive:

http://www.breastcancer.org/treatment/lymphedema/

This is an actual fact worksheet that is very helpful:

http://ww5.komen.org/uploadedFiles/Content_Binaries/806-325.pdf

One last one just because I am an options girl. LOL

http://www.vascularweb.org/vascularhealth/Pages/lymphedema.aspx

Herceptin #6 of possibly 12?

I left my home this morning at 8:30am for another round of the IV drug Herceptin. I ended up in the waiting room forever. I guess the Infusion Center was really backed up. But I borrowed an iPad again so I kept myself busy looking up studies of Herceptin. [More on that later] I love that they have the iPads there to borrow. It sure beats carrying around my big laptop. Although now it makes me want to have one of my own. Dang! Cancer IS really expensive. LOL
I finally made it back to the Infusion Center at 9:45am. See a very long wait?! Carrie (from Chemo #2 ) was my nurse. Yeah for me! It was great to chat with her again. She's awesome! They put me in the Dugout Room for my treatment today. Since I didn't bring anyone with me this time, it was fun to be with other people. (I do call it a Party Room after all) The patients at Roger Maris Infusion Center come for all kinds of infusions not just breast cancer. But cancer is cancer and it kind of bonds us together regardless. I love it when I find other positive, happy people there. There was one man in particular that made my day! He was an elderly gentleman (almost in his 80s) named Gordon. I fell in love with him right away. He had the whole room rolling with his sense of humor and funny comments. We teased each other about our chairs and our hair or lack of it! He shared his strong opinions about what's wrong with the world, about how he's been "dying" for 20 years and his plans to travel the world before he leaves. I couldn't help but smile the whole time he was there. What a great man!
The Infusion Center also has volunteers that come around and serve snacks with the patients. The Volunteer  today noticed the pink ribbon on my necklace and my nails. She's also a breast cancer survivor so we got to swaping stories. I love to hear the steps that others took. They are all so different. We chatted about how when you're diagnosed you really just have to pray, make your decisions and then you just have to trust that those are the right ones for you. It was so fun to talk with her (and eat her snacks)!
The Pharmacy was also slow but Carrie got in my IV and started the fluids. Unfortunately she got it in on the 2nd try. Stinky veins! Now I'll end up with a bruise on my wrist. Bugger! Poor little arm. [Insert fat bottom lip here] The problem is that since that they took Lymph nodes from my right armpit that arm is now off limits for needles and blood pressure for the rest of my life. Buggy cuz that one has my best veins. Such is life of a cancer patient though- so get over it, right? ;) The actual Herceptin drip was only the short 30 minutes but I didn't end up leaving the center until 12ish. One LONG day again! I don't know why I expect it to ever be any different! I just keep telling myself that it's just cuz they love me so much up there, they don't want me to leave! LOL That's my story... and I'm sticking to it!

Ready, Set, Go Pink! Fingers

The Zollinger girls came over today with a little awesome treat for me. They have recently come across these cute little nail things from Jamberry. A lady they know that used to live here and has recently moved back sells them. Teri found some Breast Cancer ones and got them for me. How sweet is that!? Even better- they came over, visited and put them on for me! Thanks Teri and Kate! Just luv you gals!

How cute are those? With my leftovers, I'm totally gonna do my toes this week. So fun!

Later I even did my toes. So cute! Thanks again Teri- they are so fun!

SUCKy Thing #2 is out!

FINALLY!!!!

We had our appointment with Dr. Bouton this morning. It was NOT soon enough! There were several times these last five days that I wanted to scratch my side off. It was seriously digging into my rib or something. And there was no comfortable position to sit or lay in. Ouchy WhaWha! Not to mention the grenade always hanging from my body. Disgusting! It was smelly and icky. Ever time I drained it, I got a little whoozy! I could NOT wait for today to be here.

When Dr. Bouton asked how I was, I told him "3 freakin' days overdue!" [Insert my mean face here] I totally meant it too. Even if the boys in the room thought it was funny. Not happy, I tell you! He got right to work, snipped the stitch and yanked it out. OWWWW! It was worse than I remember.  But perhaps that was because I opted to stay off the mega drugs this time. Dang! Not that I like the world spinning in circles and napping my life away. Just saying -Today I missed them. LOL Hopefully, I never have to do anything like that again.

I then remembered how my side continued to be sore for a couple days afterwards with the big honkin' bandage over the hole! I informed the doctor that I may think about forgiving him in about 3 days! LOL

But... It is out! No more sucky things for me! LOL I ended up taking the big bandage off by the end of the day AND I feel like a new woman!

YEAH! YEAH! HipHip HURRAY! 

He said everything is looking really good. He even pulled off a couple of my sterry strips for me. [So weird by the way!] He then made sure I will be seeing Dr. Panwalker soon. He also wrote me a prescription for some fake boobs, and said he'd see me in 6 months! [or sooner if we leave] Can't believe my time with Dr. Bouton is over. Crazy! Where does time fly? I have really appreciated his talent, his Texan accent, and his beside manner but if we never see him again- that'd be ok with me! ;)

Burning in my Bosom

This seems to be my THEME for the week.

First, I actually have a burning feeling in my chest. Mostly when I lay down. I think it's all my cells trying to figure out what we just did to them and why all my breast tissue is gone. I'm not sure. But it's irritating. Sometimes at night it feels like someone is sitting on my "bosom" with a hot pad on their behind. Not a good kind of burning in bosom in the least. LOL It's not as bad when I am Ibuprofen-ed up and sitting but I'm hoping to get off all the pain meds this week. Pray that this kind of burning in my bosom is short-lived. ;)

Second, I got another Priesthood Blessing from Brett this week. He gave me one the same time he gave the kids their school blessings. I felt once again the peace and assurance and promise that God is part of this journey. I am so grateful to be a member of The Church of Jesus Christ of Latter-Day Saints. I am grateful for a Hubby who is worthy to hold the Priesthood. Who can call down the power of heaven in our behalf  through this "little bump" in our road. A "burning in my bosom" (an internal testimony of the Holy Spirit) is a phrase I have heard from the time I was a little girl in the Church. But this week, it seems significant for some reason. Perhaps because of my THEME for the week (I have always felt like God speaks to me in themes anyways LOL;), but perhaps more because I have felt God's love so strongly in my life as of late. I have felt that "burning in my bosom" as we have prayed, made decisions, endured pain, and searched for understanding. I felt so strongly His love and strength as I came across this Mormon Message. I'd like to share it with you! Thanks to a loving Heavenly Father for being mindful of me this week.

I love Elder Joseph B. Wirthlin's advice. I know it applies to everything and everyone but I can't help but feel that God choose to have this video made just for me and my Cancer journey.
1. Learn to Laugh- Extend your life and make the lives of all those around you more enjoyable.
2. Seek for the Eternal- You may feel singled out... but learning to endure... are precisely the kinds of experiences that stretch our understanding, build our character and increase our compassion for others.
3. Principle of Compensation- The Lord compensates the faithful for every loss! (I wonder what He will do since I lost both my boobs? LOL)
4. Trust the Lord- The Lord Jesus Christ wants us to be happy!
We can endure hardships and trials, and learn to say, "Come what may, and love it!" Do your best and leave the rest to Him!

Forcing myself to "take it easy" this week, I have spent many, many, many hours reading the Hunger Game books. I just finished the second one, Catching Fire. Get it... BURNING in my Bosom? Catching FIRE? See a theme there? LOL Just thought that was funny.


I'm always good for a theme! LOL

SUCKy Thing # 1 is out!

We had our follow-up appointment with Dr. Bouton early this morning. I took a couple of my powerful drugs (the pain meds they prescribed my at the hospital which by the way, I have pretty much weened myself from over the last couple of days) to make sure I could handle the day- ya know, the pain from another procedure especially if they weren't gonna knock me out for it. It backfired a bit cuz the world kept spinning and I had to take 3 hour nap when I got home. Dang! I am not meant to be a drug addict, for sure! LOL

Oops! Off on a drug tangent----Back to my story: I have been using my powerful Jedi-mind tricks to get my JP Bulb numbers to be low enough for him to take them out of me. It half worked!!! He praised me for my miraculous Pathology results and my healing from surgery. But even with my very low numbers that I got yesterday from the right drain, he wants to leave it in a bit longer. He says he likes at least 2 low days (I've only had one but I'm sure by the end of today it will be two) and so.... I am doomed to keep the straw sucking out my right side until next Tuesday. Grrrr! But one is better than none, I say. Get the left one out! 

Totally more gross in my mind than anything but he snipped the stitch and slowly yanked it down and out of my body. Brett watched it. He said he could totally see it snake out from under my skin. Gross! But I didn't pass out, the SUCKy thing is OUT and I'm all bandaged up! A big huge Hallelujah!! 

I can't tell you how free-ing it feels to have it out! I'm so excited! It is a little sore because he left the hole to close up on it's own. That's gross as well!! Does he realize that there's still a 1/4" hole in my side?? Guess he thinks since I've been so amazing thus far that this will be no different. Hope he's right. LOL

With the Straw                             All Bandaged Up

CANCER FREE!!!!

Dr. Bouton aka Dr. Boob Remover called during dinner tonight. He has the pathology reports back from my surgery. He said there was no further signs of cancer in my lymph nodes that they took. And in my breast tissue, there was only a tiny part that was still cancerous (after Chemo) and they got it all!!! They (meaning medical professionals) probably won't give me the Cancer Free ticket for a year or two. We still have a quite a road ahead of us on this Cancer Journey! But for me- CANCER FREE day is today! Let's hear a big WAHOO!!!! Wait... I didn't hear you... One more time for good measure. WAHOO!! Yeah, TEAM SHAY!

Thanks to everyone who offered up a word or two or three or (... you get it)

 of prayer for our family! You are amazing! 

And many, many, many grateful praise to a loving Father in Heaven 

for keeping me around for a while longer! 

XOXO to you all!

Bullet Proof Vest and Clear Grenades

I know some of you already have begun to think of me as a Super Hero but this makes it official!  Here's my new Super Hero Outfit or at least the  bullet proof vest part of it. I am on strict instructions to wear it non-stop for 4 days or so. And then what???... I still have straws protruding from my sides attached to clear grenade looking things. So even if I take it off, what do I do with those? Believe me, if throwing them was an option, I would have already done that. Possibly blowing something up along the way. I heard that people shout hallelujah when they finally get them removed but now I am a believer. I am gradually weening myself off the pain meds and it hasn't been that bad (the surgery sight or the stitches) except for the tubing! The thought of these gross drains alone makes me queesy. Then the feel of them stitched into my sides is sometimes twitch-worthy! I have to be careful they don't hook on anything or get yanked on. They rub against my sides and stick to me if it's hot out. I can't figure out if hiking my bra way high or pulling it way low would make it feel any more comfy. Neither seems to work. And as Glory so eloquently put it- "They cut off your boobs but now you look pregnant." LOL Oh the honesty of a four year old. She's right though. Not much I can do to hide my flat chest and bulging stomach (or sides of it at least)  I  do have an appointment Thursday morning with Dr. Bouton. He said my numbers need to be below 20ml on a side to have it removed. I'm willing them to cooperate (Jedi mind tricks should work, right?) cuz I need them gone! We'll see how that goes... but a girl can wish, can't she?

MY JP Bulb Drain Numbers

Friday L- 30, R- 59
Saturday L- 23, R- 44
Sunday L- 19, R- 35
Monday L- 15, R- 24              
     
Wahoo! Me! Hope it stays that way for the next couple days!

(Just gonna add the next few days here)
Tuesday- L- 12, R- 24
Wednesday- L- 7, R- 12
Thursday-  L- Got it out! Yeah! R- 12

A few shots of my grenades: Gross, I know! But that's reality of a bi-lateral mastectomy cancer patient. ;)

Filled

Emptied

Do YOU have Boobs?

Just had to share a few silly Glory Cancer stories with you!

First, Glory is my buddy. We spend all day every day together. And she is four! So naturally she is curious and says whatever is in her little head. I love it! Throughout our whole Cancer journey she has asked questions, wanted to be involved and in turn we have been very honest and open with her. In certain public settings, that has proven to have back fired a bit on us! LOL

From diagnosis to my Head-shaving Party was less than a month. It wasn't much time for the kids to process what was coming. Leading up to my hair loss, Glory asked me every day "are you gonna shave your head today"? She wanted to make sure she didn't miss it. Not that she could have and she actually ended up helping shave it. Silly girl! After I was bald-- whenever she saw me without my wig, she would giggle and say "Mom, I see your boring hair!" It was so cute!

Then, leading up to my surgery, Glory asked me almost every morning, "Mom did they cut your boobs off today?" Nope, not yet. "OK, Can I touch them?" AND usually I let her. (With my shirt still on) She wanted to make sure they were still there.

Next, the week of my bi-lateral Mastectomy, Glory got sick. It made it so we decided to not have her visit me in the hospital. KBro helped us out by spending some time with our sick baby so the rest of the family could come up. (Thanks lady- You're awesome!) They were snuggling on the couch watching a Dora when this conversation happened.
Glory looked up at Kristen and said, "You have brown hair?"
Kristen- "yep"
Glory- "Can you take it off?"
Kristen- "No"
Glory- "My Mom can take her hair off"
Then a little while passed and Glory said- "You only have brown hair, right?"
Not sure if Kristen was supposed to feel guilty for only having one kind of hair. LOL Too funny!

A couple days later, the Fam went swimming with the Brothersons and the Friederichs. Glory was standing next to Kristen (Kristen was sitting on the ground) when she started staring and inching closer to Kristen's chest. She finally reached out and touched Kristen's boobs as she said, "You have boobs?" LOL Yep! Then she informed Kristen, "My Mom doesn't have boobs". LOL Oh little Glory girl! Nothing like inappropriately touching someone at a public pool. Thank heavens Kristen knows the context of the questions. ;)

Finally, now that I am boob-less and have done a little prosthetic shopping, things have got really interesting. LOL The first week or so when I brought home my new accessories, Glory constantly would ask, "Can I hold your boob?" We had to set up some rules about taking them out. (They are NOT cheap, people) Now that I have a couple pair in my closet, Glory is very helpful. Whenever I'm going somewhere that I am getting fancy for, Glory will say, "I'll get your boobs for you." And she'll go pick me out a pair. Oh heavens! Hopefully everyone will cut her a little slack as she works on her TMI skills. But if you are a woman and she touches your chest and asks you inappropriate questions- at least you'll know why. AND if you only have one color hair and can't grab your boobs out of the closet... it just means you are NOT as cool as Glory's Mom. Don't take it personal.

Sure love you, silly little Glory girl!!! XOXO!

This Room is Paid for: Coming Home

A few more notes jotted about our stay and then we head home.

August 3, 2012

12:05- Vitals by Rachel. She's my favorite!

12:20- Nurse Liz did an assessment & meds (1). Sleep.

5:00 am- Assessment. No vitals. Meds (2), Bathroom. Sleep.

6:00 am- Dr. Tall, Dark and Handsome stopped by again. He told me things were looking good. And that don't feel rushed today because the room is paid for! I like this man!

Rachel emptied JP bags. 7- L, 20- R. Much clearer.

7:30 am- Vitals by CNA Veronique. 106/64. 97.7 temp

7:45 am- Dr. Bouton- He said I'm doing great. Get log for discharge bags. Can take stool softener when I get home. He'll write out a prescription for the breast forms but can't go try them on for a couple weeks. Then can't wear them for 4-6 weeks.

8:45 am- Vitals by Nurse Brittney.

9am- Jordan Ohlsen stopped by to visit. Ate breakfast. Called Brett.

9:20 am- Meds (1) Sent prescription downstairs.

9:50 am- Brett came to pick me up. Got changed in clothes. We told the CNA we were ready to go. Bathroom-Tiny BM. Yeah!

10:15 am- Still waiting! Nurse Brittney finally came with paperwork to check us out! CNA wheeled me down to the car.

We're heading home!!!

Here's the loot they sent me home with. New gauze, pain meds, a breathalyzer, a barf bag, a new bra, and lots of instructions. Oh the days we have ahead! 

The rest of the day was filled with meds, sleeping, eating, draining bags, showering and visiting. But we made it through the day! Go TEAM SHAY!

The Happenings of a Hospital Room

Another fine list from my little pink book from a Day in Room #268. Then maybe I can be coherent enough to actually write something.
August 2, 2012
Midnight- Woke up by the beeping from low battery on IV machine, used bathroom, Got my vitals taken, and got pain meds from Nurse Liz & Rachel.
4 am- Got Vitals. Got 1 Pain med. Bathroom. Gasey (they like to hear this).
5 am- Machine beep woke me up. Air bubble somewhere.
5:30 am- Dr. Hightower (This is when Rachel and I started calling him Dr. Tall, Dark and Handsome) stopped by to check on me.
6 am- Learned to drain JP bags. They wouldn't give me another med- grrrr! Went back to sleep.
8 am- Dr. Bouton stopped by. Took off dressings (they were taped on). Gave me permission to go home. But I thought I'd stay one more day because of the flu bug at my house. He gave me instructions on recovery. Make sure I empty the bags and record them. Squeeze hands. Lift arms slowly to my shoulders.
8:15 am Vitals by Jodee.
8:30 am- Meds finally from Gabi. I cried cuz they waited too long. Got my IV out. Leg cuffs off.
8:45- Dr. Stover stopped by.
9 am- Breakfast- Eggs Benedict. Banana. Juice. Watched TV. Listened to music. Talked to Brett. Slept.
12:00- Vitals by Maria. Called Katie about coming tonight.
12:25pm- Meds. Bathroom. Read Hunger Games book. Nap.
2:00 pm- Lunch- Mandarin Orange Chicken Salad. veggies, Jello. Juice. Bathroom. Rested.
3:00 pm- Brett, Liberty, Justice, Victoria came by to visit. CRAZY!
3:30- Vitals by Kortney. Family left shortly after.
4:00 pm- Rest. Meds.
4:30 pm- Kristen B stopped by to visit.
7 pm- Katie came by. KBro left. Ordered dinner.
8 pm- Meds. Nurse Mary. Ate dinner- Pecan crusted Tilapia, mashed potatoes, juice. Computer froze. We walked down the long hallway! LOL
9 pm- Katie left. Drained bags- 15 L, 25- R Bloody looking. Sleep.
"I'm feeling pretty good as long as I keep up on the Norco (part Hydrocodone, Bitartrate, and Acetaminophen). Incisions are tight and clean. The bags feel buggy like they are tugging especially on the right side. I can move around way more than I expected."
Now a few more pictures.
Brett brought some of the healthy kids up to visit me in the hospital. [Thanks KBro for watching our sick baby at home so they could] They brought flowers, treats and some cards they made. So sweet! That's where the sweetness ended. They pushed all the buttons on the bed repeatedly, fought over the wheely chair, pushed each other all over the place, tied each other to it, drew pictures on the board, yelled and laughed and pretty much drove me crazy within a few minutes of their arrival. All while Brett put his feet up on my bed and took a little rest. Oh gotta love kids and hospital rooms! Needless to say, their stay was short. And I needed a nap after. LOL

After the kids left, KBro stopped by to visit. Unfortunately, I didn't take a picture but she did bring me flowers so I improvised. It does make me laugh though cuz we have a long standing joke about drawing stick figures in pictures so this photo is actually perfect for her. LOL Luv ya lady!

Katie came by after to visit as well. I ate dinner, we chatted and even went for a walk down the very long hallway. That is me being sarcastic because it took us all of possibly 65 seconds to walk from one door to the other before we were trapped. LOL Thanks for coming up to pass my evening with me, lady! ;)

One more night in the hospital and then I will chance the disease stricken place I call home. Let's pray they miraculously all get better by the morning! ;)

Under the Knife

The Day I Lost my Boobs aka My big "Under the Knife" Day is all quite a blur. But I am an awesome list maker (I kept some good notes in my little pink book. Ya know... some have little black books... Mine happens to be pink. LOL) so I thought I'd share my schedule of events for the day. And my thoughts about a few pictures I got in spite of being highly drugged all day.

August 1, 2012
5:30 am- Woke up to go.
6 am- Check-in. Answer questions from Nurse Leah. Got into Paws suit. Fill it with warm air. Dr. Split- Anesthesia came by to meet us.
7 am- Dr. HighTower & Dr. Bouton stopped by to see introduce themselves. Leah started IV.
8 am- Lymphadema Imaging
9 am- Wheeled me upstairs. Goodbye to Brett. Got a little emotional. Bathroom. I'm my own saline pole.
Operating room. Gave me a relaxer. Next moment- "Sheleray, You're all done."
[Brett ran home to check on the sick kids. He was only home a half an hour when Sr. Stover called and said he was done. They were super speedy Boob removers. Let's pretend that has nothing to do with the size or "maturity" of my breasts. LOL]
11:30 am- I wake up in  the recovery room. My speech and sight are all weird. I dosed in and out for quite a while. Oxygenator on finger. Oxygen in nose. Blood pressure. IV.
1:00 pm- Gave me powerful pain meds through IV. Nurse Carol. Wait for observation. and them getting a room ready for me.
2:00 pm- Wheeled me up stairs but wait in hallway while they finished cleaning room #268 in new Maturity wing. Dang nice room!
2:10 pm- Saw Brett. Unhooked IV but still have Oxygenator on thumb, blood pressure cuff and they put on leg presses to avoid blood clots. Nurse Kyla took vitals.
3:00 pm- Stood up  for 1st time. Used bathroom. Requested meds. Can move arms lots more than I thought I would be able to.
4:10 pm- They hooked up IV again to get me fluids. Still no meds. Asked again. Dull pain but don't want it to get bad. Finally asked for morphin instead. Ate jello & applesauce. Got pink Limb Alert Bracelet.
4:45 pm- Took a nap. Flowers delivered from Seamons Family. Brett went home to take care of sick kids.
5:15 pm- Dr. Bouton stopped by. Checked out stitches. Changed pads. He said first results show nothing in the lymph nodes. YEAH! Nurse Ellen took vitals.
6:15 pm- Jen Neuteboom came to visit. Bathroom.
7:30 pm- Order dinner- Chicken Noodle soup, strawberry jello and juice.
8:00 pm- Meds- Norco (2). Ate. Chatted.
9:00 pm- Jen left. Called family to say goodnight.
9:30 pm- Vitals. Used Bathroom. Slept.

Now for PICTURES!
This is my Recovery Nurse Carol. She was great! She was the one that was with me during recovery, gave me pain meds (Yeah for her!) and wheeled me up to my room.

These are the lovely anti-clotting leg compressing wear that I got to sport for the 1st day or two. They filled with air in different spots at different times and rotated from one leg to the other- repeating the cycle over and over and over again every couple minutes. They were really buggy! And they wanted me to have them on EVERY minute that I was laying in bed. I couldn't wait until I was up and moving so I could take them off. They made it so I had to ask to be unplugged every time I had to use the restroom. What a pain!

This was my 1st room Nurse Kyla. She was kind but was only with me for a couple hours before shift changes.

This is my fun PINK Limb Alert Bracelet that will now be a permanent part of my hospital attire for the rest of my life. Now that they took out limb nodes in my right armpit, I have to be cautious of ever having blood drawn or blood pressure taken on that arm. Dang! Cuz that is the arm that has the best veins in it. ;( Oh well! Bummer deal of the Cancer fight!

A shout out to my Sunshine friend, Jen for spending some time with me. Thanks for hanging out with me for the evening. You're awesome!

This is my favorite Nurse Rachel from my stay at the Hospital. She was so kind and friendly! Most of my time with her was in the middle of the night but I am grateful for her. She was my night nurse for both days I was there. It was her and I that had the joke about Dr. Hightower being Dr. Tall, Dark & Handsome. [I wasn't sure of his name and when she saw him, we both agreed of him fitting the bill for our knick name of him.] Thanks for all your help, lady! You were so appreciated! [None of my nurses from Day Two were even blog-worthy. Not that they were mean but they weren't worth taking the time for a picture.]

So there's my BIG day in a nutshell. We made it through Day One! We feel so blessed that things went well. We'll have our final pathology reports in a couple days. Here's to a speedy recovery!

4 Bee Stings in my Boob

Brett & I woke up at a very early am hour to head to the hospital for our BIG day. All showered up with my surgical soap, dressed up in my "Fight like a Girl" attire, no make-up, no jewelry and a front zip-up change of clothes for after. All set and gorgeous, let me tell you! After our 6 am check-in time and changing into my new beautimus Paws Suit (a hospital gown that can connect to a tube allowing warm air to be shot into it), we answered questions from Nurse Leah. She was way nice! She did an excellent job at getting my IV all hooked up. That was way important to me today. So, thank you, Leah!

The Beautimus Paws Suit

Nurse Leah

Over the next couple hours, we were visited by several of our doctors for the day. We met with Dr. Split, our Anesthesiologist. He went over his plan and said he was going to try to not use a tube down my throat while I was under. How nice. Because of that, I think he's great! ;) Dr. Hightower, one of the Surgical Residents (later known as Dr. Tall, Dark and Handsome) and Dr. Bouton also made a visit to talk about the surgery. They were all very kind and understanding. Dr. Stover never made it by that morning but he was my Dr. Left Boob Remover. He made a visit to me later the next day. So a big thank you to him as well.

Dr. Bouton gave me his autograph right on my chest. I didn't request it but he must have thought I was a fan of his. [He was right! I might add]

At 8 am, they wheeled me down to Imaging for an X-Ray. I was sent there to do testing on my Sentinel Node in something they called Lymphodema Imaging.  Unfortunately, the nurse that wheeled me down must have not passed on the info that I was there because I sat alone waiting for a long time. I figured they must have forgotten about me. So mean!!!! But the Imaging Nurse finally came out and found me. She took me in a room, laid me down on a super skinny table and gave me 4 bee stings in my right breast.

OUCH! So rude. And I am not kidding! There was the actually poke of the needle and then it felt exactly like a bee sting. Ouchy WhaWha, people! The sharp, stinging pain lasted for about 30 seconds to a minute for each "sting" I got. So like 2 whole minutes of constant pain while I tried to hold really still. Not fun at all!!!!
Then the nurse moved me into position under a rotating camera machine that took shots of where the dye was headed. My nodes cooperated fully and she got a great shot. At least that's what she told me cuz it just looked like a fuzzy old black & white TV screen to me. But if they got what they needed, I'm happy! Right after that, they wheeled me upstairs and I got one last kiss from Brett before they rolled me through the big scary doors to the operating rooms. Holy cow! Here we go!

Here's what the actual Lymph Node procedure is all about.{I stole the info from the Internet} You know-this is what the medical team says happens.:

Definition: Lymphoscintigraphy is a technique that is used to determine the sentinel lymph node (first lymph nodes the tumor is draining into).
Pronunciation: LIM-foh-sin-TIH-gra-fee
Procedure: During lymphoscintigraphy, a radiologist will locate your tumor, and inject a small, non-toxic amount of the radioactive element technetium and a blue dye into it. While you lie still, a computer records the path of the radioactive material towards the draining lymph nodes. The substance flows through the lymph system into the sentinel node, the first lymph node to which any cancer would spread in a given area. The blue dye will assist the surgeon in finding the sentinel lymph nodes (the sentinel node and one or two others), which will be removed and tested for metastasis.
Sentinel node biopsy is a technique that helps determine if a cancer has spread. When a cancer has been detected, often the next step is to find the lymph node closest to the tumor site and retrieve it for analysis. The concept of the "sentinel" node, or the first node to drain the area of the cancer, allows a more accurate staging of the cancer, and leaves unaffected nodes behind to continue the important job of draining fluids. The sentinel lymph node and possibly one or two other nodes are removed and biopsied. The results of the biopsy can help doctors decide whether or not to remove other lymph nodes: If the sentinel node and other nodes show signs of cancer, the nearby lymph nodes are removed. If they do not show signs of cancer, the rest of the lymph nodes will likely be cancer-free, and further surgery is not needed.