Onward and Upward!

Now that I am using Betadine instead of Neosporin, my left incision is healing nicely. Yesterday I was able to have my third fill—60 ml woohoo!!!! 

My doctor assured me that he knew what cancer recurrence at the incision site looked like, and he would tell me if that happened. I suppose there will always be the nagging fear of recurrence in the back of my mind, but with a 3% chance of that happening—I should just relax and enjoy life.

The "Girls" are looking pretty perky, and it won't be long before the expanders are removed and the implants are in place. I am looking forward to that happening in 2012. May everyone who is reading this have a happy, healthy Holiday and an excellent New Year.

Two Steps Forward One Step Back

Yesterday I was sooo looking forward to my third fill on Monday. But—for the last couple of days I had been noticing that  the skin around the left breast's incision was red, swollen and had a progressively worsening rash. I Googled  "rash at breast cancer incision" and found it could be anything from an infection, to an allergy to breast cancer recurrence at the incision site. Yikes!

I called my doctor who had me come to St. Luke's emergency room at 5 pm last night to examine it. He said it was either an allergic reaction to the petroleum in the Neosporin or a fungal infection. A fungal infection—I can believe since a sports bra has bound my breasts 24/7, and I have hot flashes almost hourly! He gave me Betadine to use instead of Neosporin. 

This morning the swelling has gone down and the rash has lessened. I am better, but bummed. Doc says no more fills until the left breast looks as good as the right. That means I have to wait for another week or more to get my third fill :(

Second Fill

For the second fill of the expanders on Monday, I had a tiny bit of oozing from left the incision. So as not to aggravate it,  my doctor filled the left expander with 20ml and the right expander with 50ml. I am a little lopsided, but that will be worked out soon. The left incision has already calmed down since the expansion and is looking much better.  I will have another expansion on the 12th.

With the tissue expansion water is it is injected into a metal port of a silicon encased expander. I don't really feel the injection because the breast tissue is fairly numb. The doc finds the port under the skin with a magnet. Randy thought that was pretty cool, calling a medical stud finder! 

This process continues for several weeks until the tissue expander is filled to an optimal volume. Six to twelve weeks are then allowed for the skin to stabilize and loosen around the expander. I will have another surgery to remove the tissue expander and insert a permanent breast implant. 

I am about six weeks from my initial surgery,  almost to my normal size and feeling great.  My guess is I will have the second surgery to replace the expanders with implants sometime in early 2012. It will be good to get the expanders out. They are heavy, hard and feel like breast vice grips! Not that I am complaining—I just hear the implants will be more comfortable and I am all about comfort. 

I have really very little pain, and greater range of motion in my arms. My energy level is good and I am able to do most of my normal activities without taking a nap! Life is good.

It’s a Guy Thing

Through my breast cancer journey I have met some courageous and inspiring women. But I would be remiss if I didn’t point out that men get breast cancer as well.

Since men have less breast tissue than women, more often than not— breast cancers in males spread beyond the breast, resulting in a more advanced tumor at diagnosis. Cancer found later may be less likely to be cured. Although breast cancer is less common in men than in women, it is currently more deadly; 27 percent of men with breast cancer will die from the disease, compared to 19 percent of women. Breast cancer also has a higher death rate than more common male cancers such as prostate cancer (9 percent) and testicular cancer (4 percent). 

Did you get that?
More men die of breast cancers than prostate and testicular caner combined. That's a pretty amazing statistic!
 

Yes, it's personal, not something one wants to talk about or admit. The more we talk about it the better we are. Don't let lack of awareness, embarrassment and social stigma result in a later diagnosis of male or female cancer—of any kind.
 

And I Would Like to Thank.....

It is Thanksgiving, and I of all people have a lot to be thankful for. Please allow me the opportunity to express my gratitude to all who got me to this cancer-free point.

Many were women who have either suffered through what I have—or worse. Ironically a lot of these women didn’t know me very well before hearing of my diagnosis, but they all dropped what they were doing to take my many calls, tell me their stories and show me their scars.

There are far too many women, who are far too afraid, to investigate a lump or get a mammogram. Because of these fears, they let the cancer grow and face a terminal diagnosis instead of a cure.

I applaud my newly made, cancer fighting friends for speaking openly about their breast cancers, and hope more will do the same. Yes, I know breast cancer is personal—Oh, get over it!! An open dialog has not only provided women insurance benefits and treatments they did not have in the past, but has also helped me, and hopefully others learn that breast cancer—caught at the right time, is no longer a death sentence.

I would have never found my wonderful team of physicians and the Nurse Practitioners at Baylor Medical Center if it hadn’t been for this group of outspoken women. Dr. Osborne, Dr. Albo and Dr. Izaddoost along with Nurse Practitioners, Mari and Sandra have given me three things you don’t find in all, top-notch medical professionals.  First they have given me their medical expertise—on par with MD Anderson. Secondly they have provided me with facts backed by research, allowing me to make educated decisions about my own care.  And last but not least, they have provided me with compassionate patient care to the extent I have never seen before.

I am thankful I had the courage to trust my gut in selecting this wonderful team of professionals. It’s harder than you think. It is my hope that patients demand medical expertise, patient involvement and compassion in their healthcare.

Lastly, I know, I know —this sounds like an Oscar speech, but I would like to express my gratitude to my friends, family and very stoic husband. Thanks for the food, gifts, care and unbelievable advice and support. May you all have a happy, healthy, Thanksgiving.

Oh, and don’t eat too much. Obesity and physical inactivity may account for 25 to 30 percent of several major cancers!

Pain Pain Go Away!

The pain dissipation has been so slow I was beginning to get discouraged thinking it would last forever. Then, the other day as I pecked away on my beloved mac—which is something I can easily do with my arms by my side, I realized I felt pretty darn good. I had more energy too. Yehaw, I had turned the corner.

Yesterday I had my second fill appointment with my plastic surgeon, and that didn’t hurt as much either. He was able to put 75 ml—25 ml more than he did last week. It is a weird sensation of pressure. Then, blamo at 3pm I awoke in pain. I thought I was over that, but I guess when you stretch a thin-skinned person’s hide it is going to hurt. Two pain pills and 7 hours later I feel pretty good.

Fill er Up.

Today I had two, back to back appointments with my plastic surgeon and general surgeon.

The plastic surgeon took my tubes out (thank goodness) and told me to limit my range of motion by keeping my arms by my side and to continue taking it easy. To be quite honest there is not much you can do with your arms by your side and I am a bit tired of taking it easy—but I will. 

The wounds from the drains needs to be monitored and bandages changed every two hours for the next day or so to prevent infection. A cancer buddy of mine got infected from doing too much after her tubes were removed. Say no more doc. I will continue my life of reading, working on the computer and watching TV for another week.

Once the drains were removed the expanders that were put in when the breast tissue was removed were filled with 50 ml of water. I was anxious about this—tired of pricks and the wonderful sensation of pain. A few pricks a little tightness, but all in all it wasn't bad in the great scheme of things.

The expanders will slowly be filled on a weekly basis until I get to the size I want. Then another surgery, ugh, to replace the expanders with the implants. This surgery will just be an over night procedure. My surgeon assured me I would not have to go back to the same hospital and Randy said he would stay the night with me.

I then met with my general surgeon who declared after seeing several cancerous and precancerous areas in both breasts, it was all removed, the margins are clean and I am cancer free. Yippee!

So Now What?

In my excitement over the no chemo/no radiation news I forgot to tell you what my treatment would be. Since my tumors were small, slow growing and estrogen fed, I will be taking Tamoxifen, an estrogen blocker, once a day for the next five years. It will keep the chance of recurrence down to 3% over the next 10 years.

My Oncologists did say I had the option of not taking Tamoxifen. If I choose that option my chance of recurrence is  only 5% over the next 10 years. I will take the pill daily and if the side effects of nausea, uterine cancer and blood clots raise their ugly heads, I will go off of it.

The advantages of taking Tamoxifen is that it improves bone density to the point where I can eliminate my Actonel, and it also lowers cholesterol levels.

Next step: Tube removal and Expansion tomorrow!

It's the No Chemo/Radiation Dance!

Sung to the tune of Do The Hokie Pokie..Every body sing!
You put your right breast in you put your right breast out
Your put your right breast in and you shake it all about.
No need for Chemo/Radiation makes me want to scream and shout!

Since I have no breasts at this point, you are going to have to do this dance for me. But soon I'll be dancin :)

Mama don't take my Codeine Away!

Even though I was taking under half the prescribed amount, last night Randy and I decided I should try substituting Tylenol PM for the codeine I was taking.

BAD Choice!

That decision resulted in a night of pain and very little sleep. I text-ed (can you believe this guy!) my plastic surgeon, who assured me I could keep taking codeine for another two weeks. So glad to hear I will not be a codeine junkie for Halloween.

Soon after taking the prescribed pill I was pain free. I was telling my sister who is also a nurse about this. She said studies rarely indicate addiction to codeine. I feel better now that I can have my drug without worries. If you are two weeks out of double mastectomy surgery—Just say No to Tylenol PM!

2 Tubes Down 2 to Go

I am managing with fewer pain meds. The constant soreness has been replaced with a few killer, shooting pains from time to time when I move. Still itching from the antibiotic, but that has lessened as well.

Today I had an appointment with my plastic surgeon. One of the first things he did was unhook my front opening bra, and remove the gauze to look at the scar. Something I hadn’t really done yet. When I looked down at my chest I actually gasped. I had to chuckle at this odd reaction—I had seen the scars of others, and knew quite well what I would look like, but it was somewhat of a surprise—never the less—to look down and see nothing but a line where my breasts used to be. I don’t know what I had expected to see, but it was a bit of a shock.

Dr. Izaddoost said everything looked good and took two of the drains out—Not a comfortable experience. He then reminded me the other two would come out next week. I knew that, but had forgotten. We’ll blame it on the anesthesia. The expansion should start next Friday, and I will have more than a line to look at when I glance down!

He did say the margins were clear—which is good, but to any other questions regarding the cancer he smiled and said, “Oh dear, I am afraid you are getting your plastic surgeon mixed up with your oncologist”. 

Okay, okay, I’ll just have to wait until Nov 2, when I see Dr. Osborne to hear the more about the c word.

Is Hospital Care An Oxymoron????

I know I should focus on the positive, but I think it is important to document this…The worst part of this whole thing was the hospital care. Now, I am not talking about the doctors. My team of doctors, Osborne, Albo and Izaddoost has been wonderful and I will highly recommend them to anyone. But…. from the time I got in the hospital I had to deal with the following: For the most part it took at least 30 minutes, sometimes more, to get a response from the nurses… I had to put up with testy responses from the caregivers… Had to ask repeatedly for ice and water… Drs I had never seen before, walked in without introducing themselves…. Dirty towels and rags left in the room and bathroom—even after repeated request to remove them… My mobile toilet seat with urine in it was left in the room. After repeated request to empty it, my sister had to do it herself …the cups with blood from the drainage tubes were left to stink up the bathroom—even after repeated request to remove them… Nurses and aides trying to measure my blood pressure from my arm—a big no-no for double mastectomy patients, even though a large sign on the wall clearly indicated that was not to be done…. Nurses tried to take blood from my arm—again a big no-no for double mastectomy patients. Remember there was a big sign on the wall with instructions… Caregivers didn’t know how to work the chair where I slept. I had to instruct one night aide each time she came in the room how to get me out of the chair to go to the bathroom. That was every two hours each night. I was in hopes that she would remember how to get me out of the chair, but she never did.  Caregivers repeatedly trying to put me back in bed, even though I said over and over it was against my doctor’s instructions… At one point I looked at my foot and it was swollen quite a bit. My sister said it was infiltrated meaning the contents of the IV were going into my tissue instead of the vein. Starting and having the IV in my foot was extremely painful. A new IV was hung when the existing IV was infiltrated. Really painful… Their was lack of informed consent from an internist, ordering IV meds for slightly low potassium without discussing with me the option of taking that medicine orally. The reasoning was the pills were too big to tolerate. I can tolerate big pills far better than the excruciating pain from the IV in my foot. Taking that medication via iv instead of orally made me stay another day. That meant putting another IV for antibiotics. At that point I broke down in tears threatening to walked out of the hospital if anything else was stuck in my foot.. After much argument and putting in a call to my doctor I got an oral antibiotic. The hospital stay was a nightmare. Don’t, I repeat don’t ever go into a hospital without a friend or family member to help you. I don’t know what I would have done without my sister there to help me.

Pre-op Post

My doctor informed me today that my hospital stay might be 3 days instead of 2. He also said I should take it easy for the first week or two. That will be hard, as I like to be busy. It's genetic—members of my family bore easily. Netflix, here we come! Please send me your favorite movie rental titles to help keep me entertained.

Now for my rant de jour
Today the gal in billing informed me that I had an unpaid balance. I knew that, someone else had told me, but couldn't tell me what that balance was for. I was told to call the billing department. I did. Rather than explain the charges, billing sent me a statement that didn't make sense at all.

A call from billing came yesterday. I told them what my insurance rep advised, that I would like to pay my balance once all the insurance claims have been settled. "No, that is not our policy", was the icy answer. "Why do I have a balance when I have paid the amount I was told I owed at every visit", I asked. Long pause...No answer. The icy woman, finally said, "I will have to get back to you". "Perfect, I said. I will wait for the call". The call never came.

The gal in billing today said, "Oh no, you don't want to wait—billing will report you to collections." She also said the billing file was a mess. Charges were applied incorrectly. She promised to work on it, and advised that I call her in a couple of days. "I will be in surgery in a couple of days", I replied. She assured me she would not let the file go to collections. Should I believe her????

I am beginning to feel like the woman in the Comcast report on Sunday Morning. #$@%!.  Mind you....I have worked very hard to maintain an 800 + credit score, and a billing department who fails to give me a follow-up call is going to jeopardize this score for charges they can't explain. This is just wrong.

I knew this blog would be therapeutic! Thanks for letting me vent. I feel better now!

Now that's what I am talking about!!

I had an appointment with another plastic surgeon. Dr. Izaddoost and he was MUCH better.

Thankfully he familiarized himself with my case and actually knew how many breast I was having removed!!! He didn't have a paternalistic attitude, but explained my options—giving me pros and cons of each.

Ironically, after going to see Dr. Izaddoost, I made the same decision that the former plastic surgeon made for me the other day— to go with implants rather than the DIEP flap procedure. I made this decision knowing the pros and cons of the options before me. What really helped was Dr. Izaddoost's upbeat presentation and positive, compassionate nature.

The other doctor may be a great plastic surgeon. However when I have a procedure that causes physical changes and emotional stress, I need a doctor who cares. May my comments help you choose doctors who are both highly skilled and empathetic.

Dr Dr Gimme the News, I got a bad case of doubting you!

Well, I had a disappointing appointment with my plastic surgeon yesterday. The first words out of his mouth, in a very mono toned voice, were "How can I help you? "—As if I was just another woman having work done! My initial thought was this guy doesn't know why I am here?!?!

Aside from appearing to be clueless and unconcerned about my case he was extremely hard to understand. I guess he couldn't understand me either because after going over what had happened so far, he seemed to think I had cancer in only one breast!

Perhaps I am being too high maintenance. Perhaps he is so good he was too busy to go over my chart before seeing me. Perhaps there was a language barrier. Perhaps I need a new plastic surgeon.

The Rollercoaster Goes Down—The Rollercoaster Goes Up!

On Monday after an MRI turned up additional small nodules, I had a second biopsy on both breasts.  Today I was told the latest biopsy showed suspicious areas in the right breast, but no cancer. Suspicious indicating that even though the area isn't cancerous now, it is likely to be later.  In the left breast the latest biopsy was positive for cancer.

With this information, the doctors are recommending a double mastectomy with reconstructive surgery, and a Sentinel Lymph Node biopsy. It will be all done the same day, October 18 at University General Hospital. I should be in the hospital a couple of days. At this point I will still have no Chemo!

So, on the bright side :) and we MUST concentrate on the bright side:
• New Breasts
• Two  Surgeries in One
• No Chemo
• A four to eight week recovery
• The Memphis/ Brookhaven Trip is still on for the 28th-4th
• Grace's Baptism is doable
• No Dr appointments on Friday!

Many thanks to Avril for being my chauffeur today and keeping me laughing—And to all the people who have emailed, phoned and texted. Your support and love has been overwhelming.

An Early Morning

Didn't have to set an alarm clock this am for my 7:40 Dr's appt— hot flashes woke me up.
Oh, the things we complain about!
If I had put up with the hot flashes four years ago and gotten off the hormones, the hot flashes would be gone by now. My doctor advised it but I ignored her. Now I have four more years of hot flashes.  More later....

How could I get Breast Cancer??

I have always prided myself in eating healthy and maintaining a good weight. How could this happen?? But the risks are there and I have a lot of them.

Gender, Age, Family History, Race, Breast Density, Early Periods. No Children, Use of Oral Contraceptives, HRT (Harmone Replacement Therapy)

The statistic that really hit home was "Any more than 3 drinks of wine a week can increase your chances of breast cancer by 30 percent". Yikes!

The "Risks" link above will let you know what your risks are—Know them.

Good News is Great!

We are still waiting on one path report and an MRI which I will have on Monday, but It doesn't look like I will have to have chemo—Just a bilateral lumpectomy and radiation.

Thanks to all of you for your emails, recommendations, lengthy phone conversations, prayers, research, hand holding and more—Man, you were all so great— from family down to my insurance rep!!  it has just been overwhelming. I can't tell you how much it meant to me.

No News is Good News

You have Breast Cancer, the nodules are tiny and you need to find a Breast surgeon was about all I got out of the doctor today. If anyone has recommendations, let me know.

The Not So Good News

It all started with a small lump in my right breast just before my yearly physical and mammogram. Unfortunately, it ended up being a small Invasive mammary carcinoma in the left breast and a small invasive ductal carcinoma in the right breast. The tumor cells indicate Grade 1-2 features and show no evidence of tubule formation. What ever that means. I have an appointment today to find out more. 

My big decision for now is what doctor, what hospital??? My gut tells me MD Anderson, but I will be researching that.  This blog will report my progress. I have already found much support from family and friends. Thanks to you all.