My home away from home

Ativan

When I saw my primary care doctor I told her I wanted to try to go off the effexor because I thought it was making me depressed. She suggested I stay on it. She said most women feel depression after cancer treatment. She said I'd been through a lot this past year. She prescribed Ativan to help me sleep. It's also an antidepressant and can help with hot flashes. I'm actually feeling so much better! Still tired but at least I can sleep all night.

Oh uterus!

Now what???

Had an ultrasound of my uterus last week due to a "nodule" that was seen on my last CT and PET scans. Well it could be one of four things:

1. Thickening

2. Cyst

3. Polyp

4. Cancer

So I see an OB-GYN on Dec. 3 for a work up. 

Funny

My plastic surgeon's office is on the 2nd floor. My mom and I are kind of creeped out by this elevator because it seems like it could break down at any moment. And it's always waiting for us. We walk up and look at it, look at each other, and take the stairs. :)

Surgery...again

After 2 days on IV antibiotics the tissue expander had to come out so I had surgery Sunday Oct. 5th. I was wheeled down to the OR and my bed was parked in the silent hall while we waited on my surgeon to arrive. As I was sitting there I realized I was more anxious about making small talk with a doctor than the upcoming surgery.
So now I'm flat on my right side. I see my PS on Fri. and hopefully my drain will come out then.

Red man syndrome

I had the PCA call the nurse and when she walked in I just looked at her. Kinda funny! Apparently it's got a name, that weird eye redness: red man syndrome. They diluted the Vanco more so it was infused over a longer time period and I had no more problems. 

So I spent Fri. afternoon thru Sun am on IV's and then we went to surgery.

Hospital again!!

So...my infection sent me to the hospital for IV antibiotics. I learned that night that I'm "allergic" to Vancomycin. First my head started itching like crazy so I asked the nurse about allergic reactions. She said she'd never heard of an itchy head as one of the reactions. Then my face felt warm and when I looked in the mirror...

PT

I went to physical therapy today. The therapist massaged my lymph drainage areas (neck, abdomen, groin, arms) then she wrapped the hand/arm. I'm supposed to keep it wrapped until morning. I can tell that it has loosened some so I'm hoping that's because the swelling is going down. Tomorrow she's going to wrap it again and maybe have me try it. If it keeps the lymphedema under control I'm all for wrapping every night.

Below: wrapped arm and night "nurse"...

Infection

I saw the PS on Friday. I have an infection on the skin of my right "breast". I noticed it was getting red a couple of weeks ago and on Thurs night it was itching a bit near where the incision was. PS put me on Cipro and Doxy antibiotics. She said if it doesn't improve I may need IV antibiotics. Worst case scenario would be removal of the expander. I see her again on Tues. She drew around the reddened area with a marker so I could see if the redness was spreading.
She removed 60mls of saline from the expander and relieved some of the pressure.
The pain on the left side is getting better. Now it comes and goes but hasn't bothered me in a couple of nights. I've decided it's a muscle spasm because it feels like a cramp and when I lay on my back it goes away instantly.

Velocity Girl

Whenever I have a PET scan I sing these lyrics in my head because:

1. I love the song!

2. It lasts around 90 seconds.

3. Each segment of the scan is 2 minutes long so this helps me keep track of the time instead of counting.

Velocity Girl by Primal Scream

• Here she comes again
  With vodka in her veins
  Been playing with a spike
  She couldn't get it right
  
  Splendour in silver dress
  Velocity possessed
  The world was hers again
  It fell apart again
  
  I don't need anyone to help me
  No, not anyone at all
  `Cause my so-called friends have left me
  And I don't care at all
  
  Leave me alone
  Leave me alone
  Leave me alone
  
• 
  

http://youtu.be/3WDUgdGPNcw

Lat Dorsi muscle

Really bizarre thing: when I touch the skin on my left "breast" in a certain spot I feel the sensation in/on my back. Crazy feeling! The muscle is still attached back there so it makes since that I'd feel something.

Self diagnosis or hypochondria

I'm still having pain just below my left expander (almost said breast--ha ha). I'm still trying to figure it out. It feels like one of those "snake bite" things we did as kids where you twist the skin on someone's arm and it burns. Super painful! So I've been reading that it could be the expander pressing on a nerve; it could be fractured ribs from the expander; it could be infection; it could be pulling on the sutures holding the expander in place...

It hurts worse at some times more than others. Sleeping is difficult. I think it might have been a bit better today. 

My other issue is redness on the left breast (don't know how else to explain). It is red in the area below the nipple and hot to the touch. I think it may be swollen but can't tell for sure. I'm thinking it looks to be about where the alloderm was placed. The alloderm is usually placed to make sort of a hammock to cradle the expander. The body usually doesn't reject the alloderm but I guess it can happen. Infection is my concern. I don't have fever and I'm sure feeling worn down is from the sleep problems. I was looking at the breast cancer forums and some of the women had horrible pain from the expanders so I'm glad mine is never any worse than about an 8 on the pain scale.

Hospitals and magazines

When I'm waiting at a hospital or doctors office I usually don't read the magazines they have. Because every single time I do I get interrupted in the middle of reading an article. In the beginning I would tear through the magazine and speed read articles so I could finished before being summoned by the nurse/tech.

Well, today I went to the hospital with my grandma for her cardiac stress test. I saw a magazine with Adam Levine on the cover and was flipping pages like mad when I realized I was not the patient! I could take my time! Ahh!

Typical night reading in bed

This kind of cracks me up! So I get ready for bed and I'm usually cold. On goes the socks & sweatshirt. I start reading. Whew, hot! Take off socks & sweatshirt, turn on fan and point it towards me. Reading...Cold! Put sweatshirt back on & turn fan away from me. Reading...Hot! Annnnddd repeat. It's a good thing that I only share my bed with cats! 

OUCH!

I was attempting to arrange my little pillows around my painful post-fill breasts in preparation for my afternoon nap when...holy mother of god! Some possible 8 on-the-pain-scale pain! It's painful if it causes me to gasp. I flashed back to the nurse explaining the expander and showing me what it looks like. There are tabs on the thing that get sutured onto the chest wall or the muscle (can't remember). She said sometimes the sutures tear and it can cause some pain. I hope that's not what happened. I carried a heavy bag of library books yesterday so I hope that I just over did things again. It's super painful to sleep anyway and now this...
I'm a side sleeper and I splay my legs out so I'm not quite on my side but not quite on my stomach either. I stuck one of the pillows in my armpit last night so that my boob didn't touch the bed. Might just have to suck it up and sleep on my back. 🌛
Still happy that things are going well though!! 😸

PS appointment and fill

Plastic surgeon says things look great! She filled both expanders. The right is still larger than the left but it should even out with the implants. So my "side boob" got larger. I asked how long the expanders have to stay in and she said 6 months so after my last fill I'll wait 4 months for the implants so the skin can heal completely. She joked that the "triangle" of skin from my back kind of looks like a sail. 
My last drain was at 30mls for about 8 days so they pulled it. If I develop a seroma (fluid under the skin) on my back I'll have to go in and have it drained (with a needle and syringe).
Feels great to be free of the camisole and pockets! Woohoo!
I can start wearing my normal shirts if I can figure out which bra best contains the side boob. ;-)

New oncologist

I met my new oncologist on Wed. I liked him! He sat down with me and went over my cancer history and asked me questions. He was easy to talk to and listened to my questions & concerns. He scheduled me for a PET scan in Oct. so we can check the residual cancer in my left armpit and the tiny nodule in my lung.

Love this!

http://bertalippert.com/never-ashamed-scar/

She explains drains and tissue expanders:

http://bertalippert.com/my-breast-reconstruction-journey-phase-one-tissue-expanders/

http://bertalippert.com/my-breast-reconstruction-journey-phase-one-tissue-expanders/

On a more positive note...

No more venting...

I slept fairly well with only one drain. Nice day so I walked. I've been trying to get out and walk everyday.

I did laundry, cleaned part of my bathroom, & washed the screen from my window. Oh and I walked the dog. Now it's quiet time with reading followed by a nap.

Cancer IS NOT a positive experience!

http://blog.thebreastcancersite.com/giulianarancic/?utm_source=social&utm_medium=wearpr&utm_campaign=giulianarancic&utm_term=20140828

As far as I know, she never had chemo so no hair loss; never had radiation...so it irks me to hear her talking about hair & makeup & looking like herself again. It's great if she's "cured" and has no evidence of disease (NED). Having stage IV myself I find her "advice" to be a bit frivolous. But that's just my opinion...

Two drains removed!

First pic is drain hole.

I wasn't able to take pic of the drain but this is what it looks like (second pic). The white part is inside the body. Notice how it's larger than the tubing. It's also about 12 inches long. I asked the nurse if I could see it. She laughed and said most people don't want to see it. I told her I'm a science geek and like gross things! I watched her pull the second one out.

Bored

I feel like all I do is sleep, eat, read, eat, nap, eat...
Can't wait for these drains to come out! Number 3 is getting close!
I did complete a couple of required courses for Search and Rescue today. Along with some work on my fingerprint identification & classification course. Printed out a job application for a 911 dispatcher in Park County, Colorado and searched job websites.
So I guess the day wasn't wasted.

Amusing tidbit...

I found out today that my feline "nurses" both like barbeque potato chips and string cheese. Of course, they only had a small taste. Wonder what else they like? Maybe I'll find out since it seems like all I do is eat, read, and sleep. And the kitties are usually with me. 🐱

Update: They also like Goldfish crackers.

Wide awake and angry

I just finished writing 3 1/2 pages in a notebook about that hospitalist. I already marked his survey questions as "poor" and "very poor". I am very happy that my next surgery to have the implants put in will be outpatient.
I found out today that there are prosthetic nipples! I thought yeah, I'll do that instead of having one reconstructed! Uh, no, one price I saw was $288! WHAT??? I'll put that $288 towards that hibiscus tattoo I want. Who needs more than one nipple? Am I right? I already have one original one!

Gross coming up so beware!

The skin on my real nipple and areola was kind of crusty and dark. The PS told me that would peel off and there would be healthy tissue underneath. Well, she was right! I "helped" it along a bit because I'm a scab picker but... looks as good as new ( or looks as good as it used to).

Expander fill...

HURTS a few hours after. I was very sore right before bed so I took ibuprofen and that helped along with my heart pillows. Much better today! The skin must stretch quickly. Now it just feels like I'm wearing a bra (I'm not, just the camisole). I gave up cutting the little gauze squares to fit around the drainage tubes and just slapped a giant bandaid on 'em. :-)

Third post-op with PS

PS said everything looks good. She said my radiated skin is doing well with the blood supply from the lat flap. I had 70ml injected into the left expander and 80 into the right. She told me to try a bra and tight T-shirt to see how I feel about the size. She doesn't want to add much more because it will make my skin too thin. I see her again in 2 weeks. The drains weren't ready to leave me yet. They are at 35ml, 35, & 45. When they are at 25ml for 2 consecutive days I can call & have them removed. Maybe Friday...
It didn't hurt when she filled the expanders but my sides ache now like last time and it feels tight on the right side.

Waiting for PS in my paper half-gown

Flap procedure video

http://blog.thebreastcancersite.com/breastreconstructionanimation/?utm_source=social&utm_medium=wearpr&utm_campaign=breastreconstructionanimation&utm_term=20140818

More humor

The importance of humor

This one always cracks me up!

Whoa!

I thought I posted this but don't see it. Sorry if this is a repeat. I got a letter from my insurance company. "Explanation of Benefit Payments. THIS IS NOT A BILL."
Apparently my surgery cost $66,064.15! Holy cow! At least I didn't have a panic attack like I did after opening my first bill for chemo: over $10,000 for one treatment! I'm thankful for insurance and medicaid because my balance is $186.29. Whew!

The "hat"

There was one "special" item I encountered during my hospital stay after my urinary (Foley) catheter was removed. The nurses called it the hat. It's a plastic measuring cup thing that fits on the toilet to measure urine output. So I'd pee in the thing and leave it for the nurse or PCA to check. I felt bad that they had to empty my pee. I broke the "rules" and emptied it myself a couple of times.
Tried to post pics on here but I wouldn't work so pics will be in separate posts.

Hat pic

Hat pic

Drains: the good, the bad, and...the gross

I've been irritated the past few days. These drains are annoying me and I'm not sure the volume will go down enough to have them removed on Tuesday. The good thing is that they are preventing fluid build up in my surgical areas. I'm all for not having to deal with that! The bad thing is they hurt! The tubes are stitched in place but they still move around a bit and that's painful. I accidentally bumped one today and YEEOUCH! The tubes are a little smaller than a straw and are flexible but you don't want to accidentally pull on one! The gross things are clots and other floaty things that come out of the drain. Enough said about that.

Anyway, I'm still crazy happy that I'm on the road to finally finishing up the surgeries and reconstruction! Woohoo!

Fabulous pillows!

After my mastectomies a bag of goodies was delivered to my room. In the bag was a camisole with pockets for drains and for padding for the missing breast. There is also a paper to sign stating the cost of the camisole is your responsibility if insurance won't cover it. Those suckers are not cheap: $59! I could buy a $5 tank top and add Velcro but whatever...

The bag also contains one of the coolest items ever! A heart shaped pillow! The thing is great for helping keep pressure off certain areas or as I've been using it lately, to put under my side where the rib hurts. I also used it to protect my side from the cat (er, sorry, the nurse) from walking on my drains. Whoever makes them to give away is wonderful!

Funny!

Hospitalist

I received a survey today about the hospitalist who "cared" for me while I was in the hospital. A hospitalist is "a doctor who is not your primary care physician".
My hospitalist is the one who asked if my left eye " normally looks like that" early in the morning after turning all the lights on. I had been flat on my back in bed for hours. He also had the padding put on the sides of my bed because my heart rate went up (because of the pain of trying to sit up) in case I had a seizure. Instead of treating me for what I was there for he made me feel like a mental patient. He will not be getting high scores on the survey.

Tissue expander discomfort

OK, so the nurse at my appointment yesterday told me to take pain meds for any pain from the fill of my expanders. Nothing was bothering me at the time but at 3 am it woke me up. Kinda sore and uncomfortable especially on the sides. I think I'm less numb on the sides of my breasts. Now I'm reading until the meds kick in. Itchy, irritated, and sore but happy! :-)

Alloderm

The PS used an acellular dermal matrix (i.e. cadaver skin) on my right side. This article explains how it's used and reassures about the "ick" factor...

AlloDerm® in Breast Reconstruction

Released September 2007

AlloDerm® is a patented tissue matrix that was originally developed in 1994 by LifeCell as a graft for burn patients. Since that time, AlloDerm®'s remarkable versatility has led to its use in a host of other reconstructive applications, including facial reconstruction, abdominal wall reconstruction, and more recently, breast reconstruction. AlloDerm® allows surgeons to restore many type of tissue damaged through radiation, injury and disease using the regenerative power of their patients' own body.

AlloDerm® is created from donated human skin. LifeCell’s patented process removes all of the cells from the donated skin, while retaining all of the important biochemical and structural components. This makes AlloDerm® an acellular tissue product which will not result in rejection. Since AlloDerm® is derived from human tissue, there may be a concern that it might harbor disease carrying viruses. However, with more than one-million implants and grafts to date, the safety of AlloDerm® has been proven, as there has never been any evidence of viral disease transmission to any patients. Tissue donors are screened and tested for transmissible diseases, and a comprehensive review of each donor is completed by a medical director before allowing the tissue to be processed.

When placed in the human body, AlloDerm® repairs damaged tissue by providing a foundation for new tissue regeneration. Blood will flow into the preserved vascular channels in AlloDerm® allowing it to be incorporated into the body. As cells move into AlloDerm®, the process of tissue regeneration begins. With progression of the healing process, AlloDerm® is transformed into living tissue that not only resembles your own but also functions like your own.

For patients undergoing mastectomy, AlloDerm® is primarily used in the setting of tissue expander and implant breast reconstruction. In the first stage of reconstruction, AlloDerm® helps to provide coverage of a tissue expander and can help to decrease the number of times expansion is needed. The AlloDerm® serves as an extension of the surrounding soft tissue on the chest, allowing for a more immediate breast contour. In fact, for the right patient, direct-to-implant reconstruction, without the need for a tissue expander, may be made possible with the use of AlloDerm®.

In addition to first stage breast reconstruction, AlloDerm® has been used for numerous applications in secondary reconstruction. For example, AlloDerm® may be used in revision reconstruction to help camouflage implant rippling and to help correct implant malposition. Also, AlloDerm® can be utilized to help in nipple reconstruction.

http://www.breastreconstruction.org/InTheNews/AlloDerminBreastReconstruction.html

Second post-op, first fill

The plastic surgeon said things are looking good! She did my first tissue expander fill today. She used a magnet over my skin to locate the port on the expander. Since I'm numb there I didn't feel the needle at all! She filled my right side with 100 mls of saline and the left with 50 mls. She had put some saline in at the time of surgery so the total in my left is 100 and right is 250. It's pretty awesome to not be flat on the left side anymore!
She said my back pain was just the rib because it has no protection from that muscle. I suspect the drain tube is lurking in that area also because I think I can feel it under the skin.
I left home with all 3 drains and I came home with...all 3 drains. Darn! Oh well, I go back next Tues. She told me not to worry about the irritation around the drain sites.
So, a very good appointment!

Tissue expanders

Here's what they look like:

Since I had my chest muscle removed with the first mastectomy they used the lat flap for coverage. 

The yellow thing is the magnet that the surgeon moves over the skin to find the injection port.

Below shows a needle in the port. Skin is numb so it doesn't hurt.

Lat flap incision/scar

Took the tape off my back. Tried to get a pic showing the length of the incision.

The tape on my side is where the drains are.

Foobs

Hopefully this link works:

http://www.huffingtonpost.com/joannamontgomery/post-mastectomy-my-new-foobs_b_3886195.html

Tried to link it so it would go right to the article...didn't work.

Lat dorsi flap

Along with the lat dorsi muscle that was tunneled under my skin and around to my chest the surgeon also took an area of skin from my back. This was for added coverage because my skin was so thin on my chest. It's a small area in the middle where my nipple would be normally. Almost a triangular piece of skin. I took the paper tape off the incision two days ago and there's a area that hasn't healed well yet. I'm worried about that so I'm glad I see the PS again tomorrow so she can take a look. They like using the lat flap because of the ability to keep the blood supply intact. I don't really have any pain under my arm where the muscle was tunneled to the front (sounds ickier than it actually is!).

My other side had a skin & nipple sparing mastectomy so at least I got to keep something! :-)

Showering with drains

I usually don't take long to get ready in the morning...usually. With 3 drains it becomes more of an ordeal. Here are the steps I take:
1. Take all 3 out of pockets attached to camisole & make sure all tubes are going out the front.
2. Put lanyard around neck and thru camisole; attach safety pins on drains to lanyard so they don't fall & pull out (OUCH!).
3. Step out of camisole.
4. Take off gauze/tape around drain insertion sites & spray with Bactine to numb them a bit. Pulling the paper tape off hurts in the areas where I'm not numb.
5. Strip drain tubes and empty bulbs. Record amount.
6. Take all 3 "passengers" (drains) into the shower & be careful while reaching for shampoo.
7. Step out and pat incision areas dry. Dry off "passengers".
8. Pull up camisole; take off dripping wet lanyard; insert drains back into their respective pockets.
9. Cut slit in small gauze square and apply antibiotic ointment to gauze. This fits around drain tube and covers painful irritated area. More paper tape. I do this for all 3 drain sites.
10. Pull camisole up over shoulders, put on another shirt over it. Ready to go! ( Ha ha! Ready to go take a nap...).

It is much easier than last time because my range of motion is so much better. I think I pinned the drains to my shirt last time and that works fine also.

Feeling good!

I've been feeling pretty good the past few days. I hurt a rib while sitting in a chair on the deck last night. No idea what happened. Ha ha! That's still painful...but that's what I've got Norco for!
I'm a pro at stripping and emptying my drains. The are called JP (Jackson-Pratt) drains and work by suction. The bulb on the end fills with fluid and I have to strip the plastic tube to prevent clots from forming. Then I open the bulb to pour the fluid into a measuring cup; squeeze the bulb and plug it to create the suction vacuum. I then record the amount. I do this for each of the 3 drains.
I cannot wait to have them removed! The total 24 hr volume has to get to 25ml or less. Today's was still over 85mls.

Awesome blog!

http://thetracinator.com

She has gone thru the lat dorsi flap, tissue expanders, implants, nipple reconstruction...

She also has the BRCA 1 gene mutation and that is why she elected to have surgery.

First post-op

I saw the plastic surgeon on Aug. 5 for a post-op appointment. The nurse removed my dressings and chatted with me. She is a 13 year breast cancer survivor and had some very encouraging things to say to me. Plus she hugged me as I was leaving. My drain sites are irritated and the drains still had enough volume that they needed to stay in. I have another appt on Tues.
The doctor said things look great, better than she expected! She only injected a small amount of saline into the expanders during surgery and elected to wait until the next appt to inject more. I can feel it sloshing around in the right expander. Weird feeling!

Nurses: human and feline

I had some wonderful nurses taking care of me while I was in the hospital. It takes a very special person to be a nurse! I hope that I wasn't too much trouble for them.

I also had my cat nurses caring for me at home. Callie prefers the night shift and there were some disputes when Fiona showed up early. Callie is especially cuddly when she knows I don't feel well and she checks on me throughout the night (she did the same during chemo).

Surgery day

So last Wed., July 30, was my right mastectomy, left lat dorsi flap and tissue expander implants.
I arrived at the hospital the night before so my IV fluids could be started at midnight. I had to pee in a cup so they could make sure I wasn't pregnant. Uh, seemed ridiculous since i did have my ovaries removed in that very same hospital...
All was good until I rolled over and pulled the catheter out of my wrist. I then had to endure a very painful poking around in the same area with no luck.
Around 8 am I was wheeled in my hospital bed down to pre-op. There I was hooked up to the "bear hugger" warming blanket; a new IV was started (she used
Lidocaine); I was injected with heparin in my belly; met the anesthesiologist and he assured me he'd do what he could to prevent nausea. My breast surgeon popped in to say hi then the nurse gave me some "happy" drugs.
Wheeled into OR and this time I was awake enough to help them position me on the table. Next thing I knew I was dreaming about animals and someone told me not to rub my eyes. Then a searing pain on my left side but, hey, wait a minute...no nausea!
Recovery room memories: dry throat; pain; intact sense of humor but difficult to crack jokes with a throat like the Sahara; crazy chapped lips; asking for ice chips.

Back in room to be awakened all night by nurses and PCA's. Blood pressure cuff on my lower left leg because of the IV in right arm and lymphedema in left arm. Things squeezing my legs to prevent blood clots; bed adjusting and readjusting itself constantly.
Pushing the call button to ask for more pain meds ("What's your level of pain, 1-10?").
Then at 4 am people rushed in to put protector things on the sides of my bed because they were afraid I'd have seizures because my heart rate went high. Um, of course that couldn't be because I had just tried to sit up and it was crazy painful. Look at my chart for 2 seconds and you'd see I have a normally high heart rate you stupid man! All of the sudden an internal medicine doctor had jumped in. "Does your eye normally look like that?" I got pissed! It was the middle of he night and he had just turned the lights on. I had been lying in bed for hours and hours. How the hell was I supposed to know what my eye looked like????!!!!
" Why are you shaking so bad?" Uh, possibly from the PAIN!

Aromatase Inhibitor

I saw my oncologist on the 23rd. She saw that the MRI biopsy found cancer in my right breast and that it was estrogen positive. She said "Really? On Tamoxifen?" So she switched me to a drug called anastrozole which blocks estrogen that is produced by the body that doesn't come from the ovaries.

I was looking at the side effects list for

anastrozole and one made me laugh: "May cause decrease in height." What the what??? 

This is how I feel about Guiliana Rancic

http://pinkunderbelly.com/2011/12/15/giuliana-rancic/

Giuliana Rancic

Posted by pinkunderbelly

I wasn’t planning on writing about Giuliana Rancic’s breast cancer diagnosis in October or her decision to have a double lumpectomy or her announcement  that her double lumpectomy has morphed into a double mastectomy. Much has been written about it, and she’s done the talk-show circuit, and I didn’t feel the need to comment on the latest celeb to begin a cancer “journey.” However, the more I read about her story, the more compelled I am to comment.

First, when her cover issue of People magazine hit the newsstands, it nearly caused me to have a heart attack. I was mindlessly unloading my loot from my shopping cart and putting it on the conveyor belt when I caught a glimpse of this:

I didn’t notice the photo or her name, but was drawn in by the bold yellow headline and wondered, who’s that and what’s she got that is serious enough that she has to fight for her life??? Imagine my shock when I read the fine print and realized that it’s Giuliana Rancic and she’s got what I had — breast cancer. After the shock wore off, I thought I’d better see how serious her diagnosis is; after all, if she’s fighting for her life, it must be bad. I’m thinking stage 4 with mets everywhere.

The article in People, titled “The Fight of My Life,” speaks of her “devastating cancer diagnosis.” I’m thinking this is really bad.

As I read on, though, I learned that her BC was caught early and had not spread.

Whew!

So does this mean that early-stage, non-metastatic BC qualifies one to be deemed “fighting for one’s life”? If that’s the case, what does that mean for women whose BC is not early stage and has spread?

This kind of overwrought journalism really bugs me. I know that People has to sell mags, but good grief, how about a little truth in advertising? The cover story of  “I’M FIGHTING FOR MY LIFE” in big, bold letters nearly caused me to stroke out, and left me thinking I really underplayed my BC story. My cancer was in both breasts, not just one, and I never declared that I was fighting for my life. I’m thinking I seriously mishandled this.

I’m certainly not one to kick a sister when she’s down. That’s not my intent at all. I wish her the best; I truly do. Cancer is a terrible thing, no matter what age or what stage one is when diagnosed, and I certainly don’t mean to give Rancic grief — she’s enduring enough of that as is. However, I do wonder about some of the comments she’s made. I was hoping they were taken out of context, but ….

She said that the double lumpectomy didn’t get all the cancer so she was moving forward with a bilateral mastectomy, and I totally support her saying that deciding to have a mastectomy “was not an easy decision but it was the best decision for me.” Agreed. But when she went on to say  “Not only can it [mastectomy] save your life, but you can come out feeling healthier and with a positive self-image”

Really?

Ladies, raise your hand if your bilateral mastectomy left you feeling healthier and with a positive self-image.

Come on, show of hands.

Anyone? Anyone?

Maybe I’m the odd girl out, but the process of lopping off my breasts certainly didn’t make me feel that way, and 18 months later, it still hasn’t. I’ve talked to more than a few BC gals, and never once has the topic of feeling healthier or having a better self-image come up. Not once.

On The Wendy Williams Show the other day, Rancic spoke openly about her surgery and how she thinks it will affect her: “Listen, I love my girls, but I’m gonna feel more like a woman when this is all done.”

“I’ll be able to say that I survived something major and it’s made me stronger. I will be a better woman for it.”

 Oh boy. More like a woman and a better woman. Yikes.

I hope she’s not setting herself up for a very big, very traumatic fall.

Rancic went on to say that “scars are beautiful. I think scars tell a story.”

Yep, there’s a story there all right. Millions of women can attest to that. There is most definitely a story there. Hopefully not a horror story.

I wonder if she’s seen any images from The SCAR Project. I was blown away by photographer David Jay’s shots the first time I saw them, and receiving The SCAR Project book is one of the best gifts ever (thank you, Trevor). The women are beautiful, and their strength and kick-assed-ness is beautiful.  The scars, not so much.

thescarproject.org

thescarproject.org

thescarproject.org

thescarproject.org

Giuliana Rancic speculated of her breasts after reconstruction: “They might come out looking even hotter. You gotta have fun with this. We find the humor in everything. Bill helped pick ‘em out. I’m like, ‘Bill, that big? Really?’”

They might come out looking even hotter.

I’m gonna have to linger on that idea for a minute.

And when I’m done, I will contemplate the damage that occurs when people say things that imply that facing breast cancer is a tidy event that requires surgery and treatment then fast-forward on to the happily ever after. While the happily ever after certainly can, and does, happen, I think it’s misleading to say that BC is something you deal with and move on. The idea that after cancer comes transcendence is flawed. The idea that all you have to do is wrap a big pink ribbon around a cancer battle is flawed. The idea that everyone comes away from breast cancer a better, stronger person is flawed. It’s not that easy, it’s certainly not pretty, and it doesn’t always result in the kind of change you would consider positive.

In speaking of Rancic’s mastectomy, her husband Bill said, “Our goal is to be done with this by Christmastime and not look back. We’re taking the rear view mirror off the car and we’re not looking back, because we’re going to be done.” Well, considering she had the surgery two days ago, and is still in the hospital, I hope she’s “done” by Christmastime. It’s good to have goals.

Maybe the whole cancer thing is still too fresh for me, too raw, but the idea of not looking back is weird and foreign and borderline incomprehensible. Maybe there’s a pair of magic “don’t look back” glasses that gets passed out upon diagnosis, and I missed out on that. I can see how that might happen as I’m always in a hurry and might have scooted out of Dr D’s office before anyone had a chance to give me the “don’t look back” glasses. Or perhaps I was supposed to get them from my oncologist, but was so freaked out by the fact that I have an oncologist that I ran out of his office before I got the magic glasses. Maybe Giuliana got her glasses in advance; one of the perks of being a celeb and having cancer. Personally, I don’t know how one can experience a cancer “journey” and not look back. I hope it works out for her.

Giuliana is definitely on the fast-track. She says, “I hope for a full recovery by New Year’s Eve. We’re planning to be in Times Square!”

If any of y’all are going to be in Times Square for New Year’s Eve, look out for Giuliana. And be sure you don’t bump into her. Those mastectomy scars and JP drain holes take a while to heal.

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More waiting

I had an ultrasound yesterday. The US tech couldn't find the area. The radiologist couldn't find the area. SO I have to go back in on Wed. the 18th for an MRI guided biopsy. Never had one of those. I'm not even bothering to research it to see how it's done. I don't even care.
Feeling very sad and very alone...

Weird side effect?

I noticed last night that both of my armpits are peeling! Scary! 

MRI result

Apparently I have 6mm "spot" in my right breast that hadn't shown up before. So I get to go in on Friday for an ultrasound and possible biopsy. I got the news on Mon. and it really sucks to have to wait a week. Then I'll have to wait for results...

I've had a biopsy of the lymph nodes on the right side. That was an unpleasant experience with some sort of spring-loaded biopsy tool and one more scar.

Here's hoping that it's nothing...

MRI

I had an MRI today. It was actually in a room and not a mobile unit (semi truck trailer) like the last time. Ha ha! As I was lying on the table having the catheter for the contrast dye put into my arm, I looked out through the skylight and...gasp!...I could see a huge construction crane. As if the entire thing wasn't already causing anxiety...now, there was a crane that could topple at any moment and kill me! I had to go into the machine on my stomach so at least I couldn't see the walls closing in on me. They provided headphones and music but really, there's no point because the incessant jackhammer noises don't stop for more than a few seconds. The MRI took about 20 minutes and it wasn't too bad. Next time I'll take the earplugs instead of music though...

Lymph node doc

Tomorrow I have an appointment with the surgeon who does lymph node transplants. I am hoping I'm a good candidate for the surgery. I have a list of questions for him. It would be so AWESOME to have a normal sized arm/hand, or at least to have no increase in swelling. I am very self conscious about it and that's not good with 80 degree temps coming up. No long sleeves for me! I HATE wearing compression sleeves during the day because I feel like they make the swelling worse. I'm OK with the night sleeves. I don't mind them and I think they help.

Rollercoaster

This cancer thing is quite the series of ups and downs. I get SO irritated by the Cancer Center commercials on TV! And one of the local news stations always has some story about a cancer patient! Cancer is like the monster under the bed. Sometimes I don't think about it and sometimes it crawls out and I have to face it. I think of those cancer cells still lurking in my armpit area.  I was taking a couple of supplements that I found out were not good for someone with my type of cancer. I panicked and tossed 'em, completely freaked out that I had taken them for 2 weeks and I could imagine the cancer cells rejoicing! I feel pretty good these days. I'm still tired quite often but I'm sure with the warmer weather I'll want to get out and exercise. I have my ups and downs with the whole "positive thinking". There are some weeks when I need to be negative, put it into a low gear and just chill out by myself. I have my pity party and move on.
I tried to explain to my mom about how hard it is after treatment. Everyone breathes a sigh of relief that it's over, whew! But it's not over for me. I deal with it daily. If I talk about it I come across as being wimpy/needy. So when asked how I'm doing it is always " fine".

New foam sleeve

I decided to finally buy another type of sleeve to wear on my arm at night. I got this one from BiaCare for $150. It came with a cotton liner that I put on my arm then the foam sleeve and there's an over sleeve that adds compression.

Upcoming appointments

So I have an oncologist appointment Apr.16 and a surgeon appointment Apr. 17. I am scheduled for a mammogram on the 17th. I see that as kind of pointless since I'll be having that breast removed anyway. I guess it's a check for cancer so I'll do it. I'm anxious about reconstruction. I'm really hoping it can happen but I'm preparing myself for the worst. Then I have to decide if I want to do the lat flap procedure with the loss of some range of motion. Or should I not have any recon and live with no boobs?? I was discussing this with a guy friend last week. I told him that if I can't have reconstruction then I'll get a really cool tattoo. He said "Yeah some of those tattoos are awesome!" Or I could have only the right breast reconstructed. Maybe my skin has healed enough from the radiation and it will be OK...
So...if I don't have recon can I go topless??? Ha ha!

Any suggestions? What would you do?

Critical Incident Stress Management

I went to a CISM class tonight at the Sheriff Dept. It's good to know there are resources to help with stressful incidents after a search and rescue mission. We learned about stress and how it can build up until one event causes us to not be able to deal, kind of a tipping point. The instructor said that 85% of people are "Somebody needs to do something!" and the other 15% are the rescuers.
The instructor also advised that we not look into the eyes of the victim because that will lead us "down the highway into their soul". Meaning what you see there will be imprinted in your mind.
I wonder about CISM with cancer patients (I want to say survivors but don't like that word). I can be sailing along just fine and suddenly have my "tipping point" and I'm off the rails. I have to find ways to deal with my stress. Because I can't send a hot flash to the DHS worker who denied my medicaid, I have to chill out in other ways. ;-) Pets, puzzles, picking cuticles, Paul Walker movies & blog, punching bag...

A Year Ago

A year ago (well, March 8th to be exact) I had my last radiation treatment. A friend gave me a small calendar and I used that to record my rad treatments...to cross off the days as each was completed. I still think the radiation was much scarier than the chemo. The lasting effects still freak me out, mostly the painful areas on my ribcage and right shoulder. My right armpit area was so burned/damaged that I have no hair there. I still rarely use deodorant because apparently sweat glands were screwed up too.

I have stopped looking on breastcancer.org. I have been packing my cancer "library" into a box. BUT I have been researching lymphedema and I have been getting increasingly frustrated that nothing can be done. I try to avoid reading survival statistics (I did that the other day and was anxious and freaked out) because I don't think I fit into the Stage 4 category even though "technically" I do.

Hot flashes and the lymphedema are my main issues now. The hot flashes aren't too bad but they do wake me up at night. I am going to continue my research into the lymph system. I'm still tired and nap most afternoons. I find that I sleep deeper then and that might be due to the timing of my tamoxifen (I take it at night) and because of less hot flashes. If I'm active I have less need to nap so I'm sure exercise will help if I get motivated. :-)
I'm good to go for most activities. I just rest after.
It's still a rollercoaster with the ups and downs but I mostly feel hopeful and want to reach that five year mark.

I took my dog to the vet last week and he wanted to check her lymph nodes. He did a FNA (fine needle aspirate) to gather some cells for viewing under the microscope. He said if he saw white cells they could be from her recent ear infection but if he saw abnormal cells then it could be cancer. I almost cried. I haven't cried in a while. The slide showed some abnormal cells so he wants to do a recheck. He started to explain how chemo is different for dogs. He said for humans they wipe out all cells and its hell on the body. I said " Yeah, I know..."

Lymphedema

These are some of the things I have to deal with since I have lymphedema in my left arm. 
When I first went to the physical therapist (and this last time I went) she would wrap my arm after massaging it. I would leave the wrap on for 1-2 days. 

During the day I am supposed to wear a compression sleeve and glove. This gets annoying because of the glove. BUT if I wear the sleeve without the glove my hand will swell. Each of these costs $90-130. The latest one is pink and I got that one from my therapist.

At night I wear what looks like a giant oven mitt. It's made of polartec fabric with some kind of foam. It was very hard to get used to but now I don't mind it. Sometimes I wear it alone and sometimes I wrap it with the bandaging material shown in the first photo. These JoviPak sleeves are expensive: $400-1000. This one is a sample from my therapist so it probably isn't exactly what size I should be wearing but it works for now. The company makes ready fit and custom sleeves. I am investigating a type of channeled foam that I may be able to use. I ordered it and it should arrive this week.

Shoveling is apparently not a good idea...

I like to shovel snow and so I've been roaming around the condo area cleaning snow away from the fire hydrant and shoveling off the neighbors deck. Not a good idea. It caused the lymphedema in my left arm to flare up. I have daily issues with my arm but its usually not too bad. The past couple of days it's been swollen and achy. I'm going to have to go to see my physical therapist and I'm hoping that she doesn't have to wrap it. I wish I could see some sort of lymph vessel mapping of my body. I think there's a study that's done with a dye but I'm sure it' not cheap. It's discouraging to think that I will have to deal with this for the rest of my life.

Punching bag

I finally bought a punching bag! I've wanted one for a long time. It's inflatable and I had to add water to the base so it will rock back upright after being punched. I need to give it a name because as I was beating it up today it tried to fight back and whacked me in the forehead! Ha ha!
This thing is almost as awesome as the Chillow!!

Turmeric

My oncologist did research about how turmeric and black pepper help fight cancer stem cells:

http://www.anticancerbook.com/post/Turmeric-and-black-pepper-fight-cancer-stem-cells.html

Jesse Brisendine

I discovered Jesse Brisendine while reading an article about Paul Walker. Jesse and Paul were good friends.

He is a very inspiring person and I love reading his blog posts, Facebook posts, and tweets.

http://jessebrisendine.blogspot.com

Looking into the benefits of ginger, cayenne & turmeric.

I have been taking a homemade cough syrup every night. It has:
1 T. Apple cider vinegar
2 T. Water
1-2 T. Honey
1/4 t. Ginger powder
1/4 t. Cayenne pepper powder

I've also been putting ginger and cayenne into my green tea.

I'm going to add turmeric to my "health shot" as soon as I purchase some.

All of these ingredients have health benefits. I'll do some research and post about them.

Mmm...barium smoothie

I had to drink a "tasty" berry flavored barium "smoothie" this morning before my CT scan. Then when I arrived at the hospital I was given the same flavor choices: banana, berry, coffee. Had to drink another bottle. 

I put the numbing cream on my port site BEFORE I went today. At least I can have control over that part of it! Ha ha!

CT and oncologist appointment

I had another CT scan of my chest on Jan.2 and then a doctor's appointment on Jan. 8. The scan showed no changes, just that same scarring in my lungs. I told the doctor about my fatigue/depression/feeling crappy all the time. She said my hemoglobin is low. She also ordered another CT on Jan. 16. to check my abdomen and pelvis. I have some tasty berry flavored barium to drink this time. I also had more blood drawn for a test called a CA-125 which is some sort of a tumor marker test. I'll have to do research on it and post later.
I bought iron supplements to boost the hemoglobin (I joke that it should be called hemoGOBLIN!) and red blood cells.
I bought magnesium supplements because I read that helps with hot flashes. I bought folic acid because I heard that helps with...uh...something.