The Date is Set!

My mother reminded me again over Sunday dinner that I need to get on the horn and schedule my hysterectomy/oophrectomy soon!  I needed that prodding, because I am very much dragging my feet.  This morning, I called Dr. Soisson's office and set up the surgery for FRIDAY, SEPTEMBER 14th!  It feels okay.  I'm glad I'm doing it.  My aunt is going through the last stages of ovarian cancer...I know that I have the power to avoid that path...and yet I drag my feet...

But today, I DID IT!  As I write those words and as I wrote the date on my calendar, tears build up.  I think that fear of the unknown is what holds me back.  I'll look back and say, "I am so happy that I had the courage to do that hard thing!"  I know I'll say that.  Right now, going through the "courageous steps" is the scariest thing I've done...maybe ever. 

When I was consulting with Dr. Soisson, I remember thinking that this was not the big surgery.  Since it wasn't cosmetic, it wasn't going to be that emotional as having my breast mastectomy and reconstruction.  Right now, it seems that this one IS the big surgery, since the side effects are so life-challenging (hot flashes, inability to sleep at night, loss of libido, short-temper).  Goodness!

"Goodness!" was the text that Dan sent me this morning when I texted him and my family that I had set the surgery date.  I know what he means...goodness!  What a game-changer.  I really need his patience and support.  His understanding is what is going to make this whole process livable.  It's either me alive with the inconveniences that these surgeries bring or it's me with cancer or gone.  I pray that the setbacks will not be as large and inconvenient as I imagine they could be.  I think I'll come through this okay and my daughters and son will find courage in my example.  Because, ultimately, I'm doing this so that I can be here for Dan and the children.  If I were a lone woman in the business world, there wouldn't be as much to live for.

My mother texted me back, "Finally!  Proud of u!"  That's what I need.  Encouragement, Reinforcement that I am making the right choices.

I am so going to need the help of everyone, SO GOING TO NEED THEIR LOVE AND PATIENCE!  I am very lucky to have such a wonderful husband and great parents and in-law-parents who will care for me and the children.  Thank goodness James is able to drink from a sippy cup!  I won't be able to lift him for a while.

It's going to be okay!

Frustrating to find out that ANOTHER HIGHLY RECOMMENDED SURGEON is not covered by my insurance.  First, the Huntsman Cancer Institute is NOT covered...really?  EVERY insurance should be covering the premier cancer institute in the state!  Now, this other surgeon isn't covered.  I hope to find another highly recommended physician to get a second opinion.  This is frustrating and so much effort!

Aetna gave me the names of plastic surgeons covered in the area.  So tonight I am trying to search the web for information on these providers.  One practice has very informative videos on their website.  they explain various methods of reconstruction and show a pros/cons list of the various methods.  This is well worth a viewing.

You can access the videos at http://content.understand.com/Players/Flash/?page=Menu&account=warnock.  If this link doesn't work, then go to
http://premierplasticsurgerygroup.com  and click on the tab "View Procedures in 3D".  Then click on "Breast" and "Breast Reconstruction" from a drop down menu.

Guest Post: Heather Von St James

I was contacted by Heather.  She said she'd like to share her story on her blog.  She has experienced a different type of cancer, but I think the threads of fear, courage and triumph are resonant in all of our stories.

FIGHTING MESOTHELIONA WTIH A "VILLAGE" OF SUPPORT

In all the experiences I had gone through in my life, having my daughter was the most miraculous. From the time I found out I was pregnant, my life had gained new meaning. My pregnancy was stress-free and it wasn’t long before I welcomed Lily into the world via C-section on August 4, 2005. My “village”, which included my husband, our parents and our dear friends, came to wish our new family luck. To say our life was pure bliss was an understatement.

Although I loved staying home with Lily, I returned to work when she was just four weeks old. Obviously, I was nervous to leave her. I had no energy and spent my days feeling fatigued and breathless. I reassured myself that these feelings were attributed to the baby blues. Eventually, I decided to see the doctor and get a physical. I had no idea what I was about to hear.

On November 21, 2005, I was given my diagnosis – a diagnosis that would change my life forever. I had malignant pleural mesothelioma. Mesothelioma is a cancer in the lining of the lung that is caused by exposure to asbestos, something I was exposed to when I was a child nearly 30 years ago. I felt like I was entering a nightmare and leaving my joyous life with my 3-1/2 month old baby girl behind.

I was given 15 months to live unless I started treating the cancer immediately. It wasn’t just me I was thinking about either but my husband and daughter too. Together, we decided that I needed the best treatment possible. We reached out to our “village” and I knew at this very point that I would need them in ways I never thought possible.

Lily was cared for in South Dakota by my parents and my husband and I left for Boston. On February 2, 2006, I had an extrapleural pneumonectomy, which is a procedure that removes the affected lung and its surrounding tissues. Recovery from the surgery lasted 18 days and I stayed another two months before starting radiation and chemotherapy.

This was a frightening time in my life, but through it all, my “village” continued to grow out of love and support. We met other families during our stay in Boston that were battling the same experience. Meanwhile in South Dakota, my parents’ village was growing too. Lily was getting love from the community, including girls I had babysat when I was young.

I am happy to say that today I am cancer free. I fought the battle and won, but my experience was not as simple as that. I missed out on important milestones with my daughter, milestones that I had waited for during my nine months of pregnancy.

I couldn’t be more grateful to my “village” that stood by my family and me during this difficult time. It’s easy to take things for granted, but when you’re faced with something as horrific as cancer, you need your village to survive. I’m glad I didn’t give up my fight. Every moment with my daughter was worth it all.    

Heather Von St James is a 43-year-old wife and mother. Upon her diagnosis of mesothelioma, she vowed to be a source of hope for other patients who found themselves with the same diagnosis. Now, over 6 years later, her story has been helping people all over the globe. She continues her advocacy and awareness work by blogging, speaking and sharing her message of hope and healing with others. Check out her story at the Mesothelioma Cancer Alliance Blog.

Getting Frightened

I have this little timeline in my head...that I'll go in for my total hysterectomy/oophrectomy end of September or early October.  I'll be done breastfeeding sweet baby boy by then...
But I seem so unprepared.  Maybe I just have to set up the surgery date and go for it.


It's been in the future for so long and know it's knocking on my doorstep.  Goodness, I'm scared!

General Surgeon Appt

I had an appointment with another general surgeon to see if he had more insight into the latest and greatest techniques, ideas, referrals...  I feel like I may have wasted my time and money.  I basically just heard the same things as my first general surgeon appointment.  I should have used that time and money towards another plastic surgeon interview.  That's where the aesthetics come into play, where there may be a little different technique used.


I was thinking though, about my plastic surgeon visit in March.  I was surprised to see that expanders actually are about half of "implant" material and then on top is a loose bag space where they are filled.  (There are probably other types of expanders, but this is the kind I saw.)  So you start with some volume from the "implant" material and slowly fill each visit to expand until the desired size.  I previously thought the expander was just an empty plastic bag of sorts.  There is a metal port at the top of the empty bag part where the physician can push the needle in to fill the bag.  He finds that port with a magnet, since the expander port can't be seen under the breast tissue. 


I believe I remember reading from several people that when they switch the filled expander for the implant, the expander looked fuller than the resulting implant.  Something to remember...

Nipple Areola Tatoos

I can't believe it!  It's crazy how I can be so-almost-sure about thinking I'll probably get a nipple-sparing mastectomy...and now I'm back to where I was originally with "I want to make sure as much tissue is gone as possible". 

Now I'm looking into the details of nipple reconstruction and areola tatooing.  Apparently, some physicians take skin from an area like the inner thigh that is a little darker and will use that tissue for the areola because they think it looks more natural.  I am thinking that I don't want scars ALL OVER my body and I'll opt for the nipple tatoo.

I found a helpful process in pictures on the site tatooednipples.com.  I didn't realize that the tatoo "artist" would place a stencil over your areola region and draw a circle boundary and then begin the tatoo.  They will give you a local anesthetic, or if you don't have feeling in your breast, they won't worry about that.  Apparently the whole process can take as little as 30 minutes a side!

                                      Measuring Areola Diameter

                                

Tattoo in Progress	Areola Tattoo Half Done

I am worried that the nipple tatoo artist won't do a "natural" job.  How do you determine who is the best nipple tatoo artist in the city?  Here is some guidance from tatooednipples.com:

Types of Artists

Finding an areola pigmentation specialist is sometimes daunting for women trying to complete their breast reconstruction after mastectomy. Not all plastic surgeons offer this service; women are often left on their own while trying to find an experienced specialist. This is especially true for those who have delayed this final step in the process.

Part of the hesitation stems from confusion and misperceptions about the Goth culture at tattoo parlors. It is, however, not surprising that some tattoo parlor artists are highly skilled in 3-D techniques and do include areola tattooing in their services.

The burgeoning trend, however, in areola pigmentation is with permanent cosmetics professionals. These artists have been providing paramedical tattooing for decades and now seem to be cornering the market in providing areola tattooing.

Here are the types of artists and settings where areola pigmentation services are provided:

Plastic Surgeons: Some plastic surgeons will provide areola pigmentation as an office procedure. More often, however, they will have a staff member trained in the procedure. Surgeons also may bring in consulting specialists, as needed, or will provide referrals to a permanent cosmetics professional.

Permanent Cosmetics Professionals: Permanent make-up professionals are becoming the main go-to source for areola tattooing. The industry has embraced this need with a focus on education and compassion. Permanent make-up artists have been providing scar camouflage services for decades. It was a natural progression that this industry would provide areola pigmentation. Plastic surgeons often call upon permanent cosmetics professionals to provide areola tattoos, either in their offices or in the artist’s private facility.

Tattoo Parlor Artists: These traditional tattoo artists are highly skilled in all aspects of 3-D techniques. Their skilled artistry is certainly a baseline for areola tattooing. Many are well known for their excellent work and have opened their hearts and shops to women for these services. Misperceptions about the Goth culture in tattoo parlors should not sway you from finding the best artist in your area.

Tattoo Basics

During a permanent tattoo procedure pigment is implanted into the dermal layer of the skin by using tiny needles. The dermal skin layer is the middle layer between the epidermis (top layer) and hypodermis.

During a nipple tattoo here is what to expect:

• Measurements will be taken (while standing) to determine the position and size of the nipple. (A 4-centimeter circle is the average size.)
• The artist will first draw the tattoo shape on your body so that you can visualize and approve the placement and size. Adjustments can easily be made at this point.
• You will then recline on the table while the artist begins his or her work.
• The artist will numb the area with topical anesthetic cream.
• Pigments will be applied into the dermis using an electronic handheld device that directs tiny needles into the skin. Connected to a digital console unit equipped with a microprocessor, the device enhances precision and needle placement and minimizes trauma to the skin.
• If both sides are being done, the artist may switch back and forth as different pigment colors and brushes are used for various elements of the design.
• As the procedure progresses, very small amounts of blood may ooze from the skin. The artist will dab the skin when needed.
• The procedure will take 45 to 60 minutes per side to complete.
• Upon completion, the artist will place gauze bandages over the tattoos.
• The artist will review and provide printed post-procedure care instructions.
• The results will be darker at first, and the color will fade as the skin heals. It is common that a color touch-up is needed several weeks after the initial procedure. Color touch-ups may also be needed every few years.
• (http://tattooednipples.com/tattoo-tutorial/tattoo-basics/)

Nipple is Tissue

For a while I couldn't understand why surgeons wouldn't just remove the areola and nipple, remove the tissue from the breast and then sew the areola and nipple back on.


First of all, the nipple is tissue that is predisposed to cancer, and according to one surgeon I spoke with, a high percentage of breast cancers occur behind the nipple.  That is a convincing reason to remove the nipple and areola all together.


Multiple surgeons have explained that when you remove the areola and try to replace it, it often undergoes necrosis and dies because there is no good blood supply after you sever it by removing it in the first place.  That is why if you want to save your nipple, you have an incision somewhere else to keep the blood supply to that area.