Reconstruction...check, Living healthy......check

Friday at 11am I checked in to my old familiar room at Wellstar Outpatient and got prepped for my reconstruction surgery. This time I decided that I wouldn't make such a production out of the event and even told Lloyd and Cindi to go on into work, that nurse Brittany would be in town to take me up there for the check in. I am sure all the nurses appreciated that I didn't have my usual entourage with me! I told Dr Leake I wanted itty bitty titties, so he came with a box of them to try out and see what looked best. He had to do a lot of repair to the muscle around my left underarm because that was where the cancer was, so it took a little longer than he thought it might. By the time he came out to talk to the family and tell them all what he had to do, Kristi and Lloyd were there. Cindi had come in before I was put to sleep, on her lunch hour.

This was an outpatient surgery so I got home about 6pm. I was quickly put to bed, because the move from O.R to home made me nauseated. I took the meds and went to sleep. This recovery hasn't been too bad. I am tired, VERY. Just a little uncomfortable, only took the Oxycodone Saturday and Sunday. I do have two drains, and hopefully they will come out this coming Friday. They better! I want to go to Tennessee and prop my feet up....ha ha getting pretty good at this propping stuff! Although, this surgery moves me closer back to reality of no cancer and fix the shoulder and GET YOUR ASS BACK TO Work!!!
I have said this before but I haven't touched on this aspect of change. Cancer changes you. Cancer makes you scared that it will come back and raise it's ugly head at anytime. It is now my job to do ALL in my power to assure that doesn't happen. Most of you know that I LOVE food, it is truely a passion of mine (my husbands too- hince the weight gain since our marriage!) Anyway, we make a production out of cooking. All of the cancer books I have read has warned about processed food, sugars, white flour, alcohol, and not excercising. WELL, we have eliminated all of that from our diet. (hmmmm maybe not so much the wine) It hasn't been as hard as I thought it would be, especially since one of our other passions is gardening, so we grow a lot of what we are eating. Our spring salad garden has been unbelievable this year. How many ways can you eat Radishes.... let us count the ways! I have an awesome Spicy Kale and Shrimp recipe, too!
Exercising has been another issue! I was trying to walk about 3 miles with my friend Lisa, about 3 times a week. Of course she goes out of town about as much as I do, so timing was hard. Then my knee decided it would swell because of my RA, but after this surgery and the recovery, you will see us hitting the pavement again! Plus, maybe my sister can get her pool open and I can start water aerobics! Hint Hint!!!
Anyway, if the cancer does come back, I at least can rest assured that I have choosen the most radical approach to getting rid of it (a double mastectomy and 8 rounds of chemo) and I have done what I have  needed to do to keep it at bay! Even down to changing the deordorant I use......
I have learned, this is my body and I will fight and do what I can to keep it as healthy as I can. I want to be here for my kids and grandkids!! Cancer does not need to happen to you to think this way, go check your boobs and ask yourself, are you treating your body like you need to, in order to be healthy?

How to prepare for the cancer road

I was a girl scout so I know a little about being prepared- ha ha, plus I did my research as soon as I got my diagnosis. This is for anyone out there that may be dealing with a new diagnosis of breast cancer and may want to know how to be prepared.

1. Do your homework- Talk to friends who have been through it, see whatthey did and what they would have done different. Go to the internet and be educated www.whatnext.com is a great resource for asking questions of others that are going through the same thing.

2. Be ready for Dr's visits- have a tape recorder, because you will not remember what was said. Take a friend or family member (sometimes a friend is better because they aren't typically as emotional as a family member). Stand up for what you want- I WANTED a bilateral mastectomy, even though my dr told me she recommended a lumpectomy. I knew I would be paranoid about it coming back if I wasn't as agressive as I could be (ok, I am still paranoid, but I don't think I am as bad as I would be with just having the lumpectomy)

3. Be ready for after your surgery- I had a dbl mastectomy so to prepare:
a.I bought a recliner to sleep in, if I needed to. It was also a lifesaver during chemo!
b.I had pjs that buttoned up and had my mom sew pockets in them to hold the drains
c. I had a long bead necklace to safety pin the drains to while I showered
d. I had two round oblong pillows to put on either side of me when I slept, so I wouldn't roll over on my side.
e. I had everything placed within reach before my husband went to work. Like my coffee cup, bowls and a plate. I wasn't able to reach in the cabinet.

4. Share your story- this helps not because you are getting sympathy, but you will have prayer warriors and they will all be a means of support. You will feel like you have to be a shining example and be strong for your supporters. Being strong is half the battle!

5. Surround yourself with friends- continue to go out, be around people and keep a sense of humor. Laughing through this whole journey is the best medicine.

6. Make an adventure out of chemo- ok, so not everyone will be like me and my "chemo army" - we had army hats with a pink ribbon on it, we took food to the patients and nurses, we made posters for the wall (a Luke Bryan one, and it is my understanding it is still hanging in the infusion room), we met everyone in there just about and offered encouragement, We took our Gnome and photographed each treatment to keep track. We LOVED our nurses, we rocked out to a "mixed tape" of our chemo songs on the way, Pack a blanket, water bottle, candy if the taste bothers you, a special prayer to read, and a really fun friend to pass the time with you!

7. Prepare yourself for the after effects of chemo-
a. your hair- more than likely you will lose your hair, come to grips with it- embrace your inner warrior and don't be ashamed of losing your hair. I never wore a wig. The medically induced menopause made me hot, even wearing a hat I would have to shed it at the dinner table. I didn't think it would be appropriate to take off a wig and put it on the table! Plan a shaving party and take control of when, where, and how you will lose your hair.
b. chemo brain- you will have this- write things down, take your time speaking and explain to strangers why you can't think of the words you are trying to say.
c. Food- try to eat well. You will need protein and lots of nutrients. The ACS and your hospital will have support groups and classes you can take.
d. Looking Good- go to classes on how to keep your self esteem Look Good Feel Better http://lookgoodfeelbetter.org is a class through the ACS, it is a great one that teaches how to apply your makeup and take care of your skin. Chemoflage www.chemoflage.com is another class offered and it is really good too, you also will receive awesome swag bags when you go to the classes. Eye makeup is VERY important when you are bald!!

8. Your baskets of necessities-
a. claritin- no one tells you, but this helps with the bone pain associated with Taxol and the Nulesta
shot
b. nausea meds- take them after chemo, BEFORE you get sick
c. pain meds- take them BEFORE you start to hurt
d. hand sanitizer
e. journal- keep track of symptoms to share with the dr at the next visit, or for your info on what helps when you get sick
f. themometer-
g. hemoroid wipes- all the above medicine will cause hemoriods
h. stool softner- for the above reason

9. Remember-
a. you will feel good again- after my last treatment, I actually feel better than i did before my diagnosis
b. your hair will come back- granted it may not be like it was before, but it's back
c. you are awesome for fighting this fight!


I hope these ideas help you, if you are having to go down this road.  I would love to see other survivors share their ideas, too! Please comment below- and God bless you on this journey!!

Back again, this time with a ramble!

I am sorry I haven't written in a while, to be honest I was busy "living life" and ignoring the fact that I had cancer! I finished treatment and tried to figure out how to go about my life as a "cancer survivor". I realized that this diagnosis can not be ignored, not matter how much my hair grows back or that surgery or chemo is over. I felt stronger and started walking 3 miles about 3 or 4x's a week. I soon realized that my RA was not in remission and that I will need to go back to the weekly shots- not the news I wanted to hear, because those shots can cause cancer and I am TERRIFIED of getting it again. I went to a support group to try to deal with my "new life" and as soon as I heard the story of the young lady who had breast cancer return in her bones, I couldn' t go back. I'm scared and I don't want to hear that my fears are justified. I look in the mirror and I don't see myself, I see a different person who now has gray very short hair and it brings back to light, that I had cancer. Coming to the realization that I will never be the same person I was before has been difficult, but then again; if I come out a BETTER person, it might be worth it! Please realize, if you meet anyone that has had cancer, they are going to be different than they were before. They will think deeper, care more, laugh louder, and love harder than the average person. But also know, underneath that strength and vitality is someone that knows they should make the most of every day for they are scared that in the blink of an eye there won't be another one! That is what I have been doing, making the most of every day!!!
Now it is time to deal with my next breast cancer road- Friday I go in for the removal of my tissue expanders, the removal of my port and the placement of my implants. This is not a road I EVER thought I would be on. I have had large breast since I was in 9th grade and never once thought I would be going in for silicone implants! I had often wished for a reduction, but the amputation I went through in October was not a wish that was granted well! Let's all just hope that Dr Leake picks out some cute little perky ones that I will be happy with!!! ha ha
As with any surgery, I don't know where this road will lead. I have heard horror stories about the implants, I have heard people say it was not that bad, but I have also learned to be prepared in the event something does go horribly wrong. Hell, I hope that is how everyone lives their life anyway- as if something could go horribly wrong at any time! Live each day as if it is your last and make an impression on anyone you meet! New motto, live like Tim Hunt! He passed away suddenly a couple of weeks ago and he died "a good man". He lived each day being nice to everyone and I don't know if he knew what he was doing, or if he intentionally tried to make an impression on everyone he met, but he sure did! Maybe it's because he had been given so many new chances at life, he survived stage 4 cancer 20 years ago, had multiple heart attacks, and various other health problems- maybe he knew the VALUE of LIFE! It's sad it takes an illness or a diagnosis to learn this value.
I have tried to teach my kids to live life to the fullest, to respect themselves, not to waste time and not to "settle". If I can also now impress upon them to be a "great person" to make a good impression and to be "nice" to everyone that they come in contact with.....even the mailman- I have done a damn good job as their mother! They are my greatest accomplishment and I am so thankful for the opportunity I have to be their mother, I am blessed!

Triple Negative Breast Cancer Awareness Day

When I found out I had Breast Cancer, I thought there was only one kind- Breast Cancer. I had no clue about HER 2 positives, or negatives, Ductal, In-sutu etc. Once we got into our "cancer college" phase, I quickly learned all the differences and learned about Triple Negative- that is the type I have. Today is Triple Negative Breast Cancer Awareness Day, so I will educate you, as well. Here is a description from the Triple Negative Breast Cancer Foundation.

Understanding Triple Negative Breast Cancer

Triple negative breast cancer (TNBC) is one of many forms of breast cancer.

•Forms of breast cancer are generally diagnosed based on the presence or absence of three "receptors" known to fuel most breast cancer tumors: estrogen, progesterone and HER2-neu.

•A diagnosis of TNBC means that the tumor in question is estrogen-receptor negative, progesterone-receptor negative and Her2-negative. In other words, triple negative breast cancer tumors do not exhibit any of the three known receptors.

•Receptor- targeting therapies have fueled tremendous recent advances in the fight against breast cancer. Unfortunately, there is no such targeted therapy for triple negative breast cancer.

•TNBC tends to be more aggressive, more likely to recur, and more difficult to treat because there is no targeted treatment.

•TNBC disproportionately strikes younger women, women of African, Latina or Caribbean descent, and those with BRCA1 and BRCA2 mutations.

•Approximately every half hour, another woman in the US is diagnosed with triple negative breast cancer.  I have sucessfully finished 8 treatments of chemo, and because I have Triple Negative- that is all I have to do. Taking Estrogen or any other medications does not work for the Triple Negative patient, so we are hoping that chemo stomped out all the cancer boogers and the mastectomy got the tumor. I believe awareness and donations for research are the hope for a cure. I appreciate, and will fight for all the organizations out there supporting cures for this horrible disease! If Loreal for one month gives only 2% donations to Breast Cancer Awareness, then this chick will buy that lipstick. I get so sick of the Negative Nellies that have issues with October and the Pink Ribbon- if one damn Pink Ribbon reminds a woman to go get a mammogram, that ribbon did it's job! If one company gives one dime to research, then I praise that company! AFTER you have breast cancer, you come to me and tell me what that pink ribbon means to you. You will find that all these organinzations do mean ALOT- especially, the American Cancer Society, Susan G. Komen, Triple Negative, etc. As well as the small local organizations that do so much for the cancer patient- Loving Arms Cancer Outreach, Chemoflage, Blue Skies Family Retreats, and etc.

So here I am the Breast Cancer Survivor, beating my drum, supporting and writing about today..... 3/3/13- Triple Negative Breast Cancer Awareness Day! Research and Awareness is the key to the cure..... My Spotlight Story

Giving Survival a Voice and Cancer the finger!

This week I went to lunch with some really good friends and we had a discussion about me "sharing" my story with the world. Some people in the past have said that I have shared a little too much, these friends however; don't agree. One is a cancer survivor, and my post have given her the chance to know what was going on with me and on several occasions she was able to quickly answer a question I might have and help me out. One of the ladies was a caregiver for a cancer "victim" and she has a perspective from another side, plus she said she is going to the GYN this week, because of my reminders. The other ladies, have given me strength to stay focused on this journey and their words and friendships have kept me typing. While we were at lunch, the man sitting behind us noticed how important these friends are to me and how they give me strength. He sent us this note and paid our tab.I would not be surrounded by so many friends, if it hadn't been for me sharing! The other thing that happened because I shared, was EVERYDAY I had at least one person tell me they were praying for me- because I shared, I had more prayer warriors!


 Plus, now I am writing because it has got back to my brother, that I am a BETTER writer than he is! Those that know my brother will think this is really funny.
ANYWAY, getting back to the story. There were two reasons for this blog today- First, my friends and family give me strength and if I can help just ONE woman and let her know that she can survive the fight against cancer, and the way to do that is don't be afraid to share her story. Sharing my story gave me friends I NEVER knew I had. Those friends got me through this battle. Don't go it alone! Also, if I can help just ONE woman, by reminding them to do self breast exams and get mammograms. Then, if you are unfortunate and get diagnosed, you will maybe catch the cancer early and have a better chance in the fight against this horrible disease.
So if I help just ONE woman, my voice was heard and my "purpose" has been reconized!

The other reason for this blog, is a man in Roseville, MN saw some of my past blogs and he wanted me to share his voice. His voice is was as caregiver for his wife, who won the fight against cancer. He wants to share what he went through and what he learned through their journey. His name is Cameron, his email and pictures of his beautiful family are below. I am flattered that my blog is a venue for his voice!

When My Wife Got Cancer

In November 2005, my life was irreversibly altered. I found out that Heather, my wife, had mesothelioma. It was also when I became a caregiver to her, which I was ill prepared to handle. Only three months before, she'd given birth to our only child, our daughter Lily. All we wanted was to celebrate the holiday season as a happy, healthy family, but it wouldn't be that simple. Instead, we began a long, difficult journey to beat cancer.

The full implications of the situation hit me before we were even out of the doctor's office. He strongly recommended that Heather visit a mesothelioma specialist to improve her odds of survival. My wife looked like she was stuck in a nightmare she couldn't wake up from. We decided to visit a specialist in Boston by the name of Dr. Sugarbaker, a leading expert in this form of cancer.

Our lives were completely miserable and chaotic for the next two months. Prior to her diagnosis, Heather and I worked full-time, but Heather left work to fight her cancer. To take care of her, I started working part-time. While not at work, I made travel plans, saw to my daughter's care and accompanied Heather to the doctor. I was terrified that, regardless of the effort we were putting in, Heather would still die and I'd be a broke widower raising a baby on my own. Many times, I would break down on the kitchen floor when nobody was around to see. Luckily, these feelings of misery and helplessness were few and far between.

We were blessed with a loving family ready to help out, and even strangers were offering their support. We're eternally grateful to these people and we couldn't have gotten through this trying time without them. One recommendation I have for others in a similar situation is to take whatever help is offered to you. It will make things much easier to deal with.  There is no room for pride in a battle with cancer.

Things returned to normal over the next few years after my wife won her battle with mesothelioma. If I learned anything from the experience, it's that my tenacity can be used to my benefit and how important it is to not take our time here for granted. This was part of what drove me to go back to college.  My time as a caregiver gave me the strength and courage to pursue this dream, and I began working towards my degree in IT two years after Heather’s mesothelioma diagnosis.

I graduated with honors and served as the speaker of my class. In one part of my speech, I stated that if I'd been asked where I saw myself within five years, it wouldn't have been on that stage. I spoke of the importance of maintaining hope and that you can achieve anything with some faith in yourself.  My wife’s strength and courage has been an inspiration to me, and now we hope that by sharing our story, we can help inspire others in their own battles with cancer today.

 Cameron Von St. James

 

 

Cancer does give you strength and tenacity! So take that f'n cancer- we won!!!

It's the end of the ride!

Whoo Whooo- Valentines day / Thursday, was my very last chemo and I don't think I have looked forward to a day, in so long. It is also bittersweet! I know that the chemo is killing the cancer in my body, so I get a little panicky thinking that if without the chemo, cancer might find a way to get back in my body. I have also made so many friends, that I enjoy seeing and talking to every other week. Like David, the young man who was diagnosed with cancer and his family. Susan, who started the same treatment as me, two weeks ago. There are many others that I knew their story, just not their name. It's like the last day of school, you are ready for the summer, but you are sad too, for it to end. Anyway, you get the jest, it is bitter sweet. Kimmie made it a celebration, as she does with most occasions. She surprised me with all kinds of treats. She decorated the car, she made sunglasses and had Cindi and Brittany show up as a surprise. Dawn and her son, came in bareing gifts and sat with me a while. All the nurses were so sweet! We got Shay to sing one more song (Amazing Grace). Lloyd had made Asian Hot Wings for everyone and wrote a sweet note to the nurses that made them cry. It said, "thanks for taking care of the love of my life." Yes, it even choked me up, too!  I wrote a letter to them as well. My letter said, they were unbelievable and an inspiration not only to me, but to Brittany, too. (she said oncology is her calling and she believes she will eventually end up in that field, with her nursing). She decided this after the second time to chemo and talking to the Infusion nurses and to Dr Hahm's awesome nurse Rebecca! Anyway, they all made an impact on my life and I will never forget how in the midst of my storm, they were my safe harbour.

Maria and my last bad of chemo

I often write my blog when I am feeling better and I have said chemo hasn't been that bad. Kinda like childbirth, you forget quickly! Well, as I am sitting here with intense bone pain in my legs and knees, I can say today and yesterday, have been bad. I did not run the fever with this treatment, but the pain is as bad as the first my firstTaxol treatment. But, you know what? I can deal with it because I know this is the last time I'll have to! The most difficult side effect is the stinging, burning, itching of my hands and feet. That hurts and is really annoying (almost to the point of insanity!) Luckily this doesn't start until AFTER the bone pain, so I don't have to deal with both of the side effects at the same time! Then there is the neuropathy- numbness in my finger tips. Dr. Hahm said if I were a neonatal nurse or a surgeon, she wouldn't give me Taxol, because of having to use my fingers for my job. I told her she MUST not know about the art of passing pretzels and pouring cokes, cause I am sure if she did, my occupation would have warranted the concern, as well! Just joking. Hopefully, the numbness will go away at some point, but as long as the itching and pain stops I will be fine!

Number 8 and Final One

Kimmie (Chosen Sister), Cindi (Birth Sister) and     Brittany (my sweet baby girl)

Rebecca- Dr Hahm's nurse

I am so ready to move forward with my life, now that this trip is over. These lessons learned from the cancer I will carry on with me, though. I have always thought things happened for a reason and that God was in charge of putting people and circumstances before you, but now? I believe it more than EVER. I realize that everything you do in your life, and your day to day life COUNTS....it really matters! Everything about your life is a lesson. Every little decision you make is going to enhance your spirit or drag it down, so make your decisions wisely! After you have cancer, or any other life altering experience, you realize that you have the right to reject circumstances that drag down your spirit and take advantage of what makes you and those around you happy. Number one in importance is to be fully present and appreciate all that is in your life right now and appreciate the people and things that give you joy. The hardest lesson I will take away from cancer is to give up the need to know what is happening tomorrow and living in the present! That is a hard one for the planner, who wants to know! Taking note of every moment is important to me now. I want to be the person who makes an impact on someone's life, just by the little things I do day to day. There were so many people that did that and touched my life during this journey and I thank you!
So I have reached the destination- I am sliding in sideways, saying Whoo Hoo- what a ride! Thank you all for joining me on this roadtrip, I could not have made it without you all!

The End!
NOW- off to the next adventure!!

Click to watch my video about the last 6 months

Rocky Theme Song

Many of my friends know that I always have a song in my head- and sometimes it pops out. Well today, as I enter the final lap and await the last chemo on Thursday- the Rocky Theme song is playing. I picture myself running up the steps and on Thursday I will be pumping my arms and finishing this battle to the top!
Chemo has been hard, but I wouldn't say it was unbearable. I guess my shoulder injury trained me for the chemo. I was used to being in pain, sitting. and not being able to do anything. I never did get the nausea that some people get with chemo.Thank God!! I had it on my very first treatment of Andrimycin and that was it- of course after that, I stayed on top of the medicine and would even set my alarm to wake me in the middle of the night so I wouldn't miss taking a pill. I think that helped! The nausea pills did make me constipated and I had an issue with that, but luckily I had a friend in Dawn! She was having the same problem and she went to the specialty doctor (in that area) and told me what he said to her, so I didn't go! Thanks Dawn, for taking a probe for me!!! I know, too much information, however; I am writing this blog for women who are going through this same thing, so they may want to know the good AND the bad that came with treatment!
The Taxol is what I am taking now and after I have my treatment on Thursday I will feel fine till about 5 or 6pm on Friday- that is when I get a fever, last treatment it got up to 101- the new cut off point for me to call the after hours physician. The pain will also start about then and  won't let up until Monday or Tuesday. I have learned that the heavy duty pain pills I have, don't help the pain, they just make me feel like I don't care that I am in pain!  So now, I just take tylenol and claritan. Don't ask me why Clariten works with the bone pain, Dawn told me about it when I took the Nulesta shot and had bone pain from that medicine. The new side effect I am having with the Taxol is itching and burning hands and feet- THIS drives me nuts. I take benedryl for this and it seems to help.
But all of this will soon be over- I can handle anything as long as I know it will be better AND when!! That is the key- I haven't been able to plan anything and I am so ready to begin my life over again. I have made "an appointment" for a week long trip to my favorite beach (Cape San Blas). I also have surgery for the reconstruction coming up. My shoulder dr said to wait about 6 weeks after the boob surgery to do anything, so that is still pending. My bucket list is getting longer and I am ready to get to work on that and the party!
Listen out for all the cheers and the Rocky Music on Thursday- it's not just Valentines Day- it is the END OF CHEMO DAY!!




My BCF- Best Cancer Friend, Dawn (Super D)