Sunday, December 28, 2008

Curly Hair???

The more my hair grew out, the curlier it got. By July it had reached my shoulders and was full blown ringlets. For those of you who know me in real life, you can understand as my hair is VERY thick and has always been pine straw straight. The result was that I began to look like Bozo the clown.

My cousin has always cut my hair, so I went to see him and asked if he could cut it short. He said that since my hair grows really fast, he would cut it very short and that would take most of the curl. He also said that if I would wait about 2-3 months before I returned, the next cut would be short and leave me with just a wave. I returned to have my hair cut in November.

When I arrived home I looked in the mirror and cried for the first time since my surgery! I was beginning to look like ME again. There was just one thing left on my list of things to do....breast reconstruction. Finally, I felt like my journey was coming to an end.

The Last Chemo

February 13 was the date of my last chemo. Thank goodness for insurance. I can't imagine what the cost would have been without it. My out of pocket for the treatments because the care went through 2 calendar years was over $8,000.00!

The last treatment went really fast but I knew that it would be three weeks before I would start to feel normal again. That is the bad part about chemo....you start to feel better about 2 days before your next treatment. But...this time there would be no next treatment and I was so looking forward to a continuous improvement in my health. My hair was starting to sprout a little, blood counts were improving and I had somewhat of an appetite.

One month to the day after my last treatment, Emaleigh was born. I was feeling better but in no way was my strength and endurance back to normal. Thank goodness she was a good baby, not fussy at all.

Once she was born, the spark in me ignited! She gave me so much joy and I felt alive for the first time since my diagnosis!

Monday, December 15, 2008

And another shoe falls

During the time between September and November, details are pretty fuzzy. I was out of it most of the time. My blood counts were in the toilet, I had no appetite or energy, I was feeling sorry for myself and life generally sucked. I don't remember the date but it was a Friday night. I was in the bed and my daughter was sitting in the recliner in my bedroom. She stood up and her body turned slightly. OMG...Erika are you pregnant? She started to cry. It seems that she got pregnant right before my surgery and between the mastectomy, chemo, hair loss, etc, she could never find the right time to tell me. Didn't want to make me feel bad when I felt good and didn't want to make me feel worse when I was feeling bad.

I immediately went in to Mommy Mode..have you been to the doctor, are you taking vitamins, are you eating right? The answers were all no. Okay, Momma to the rescue to make it all better. We had to act quick as she was almost 5 months.

On Monday I called the doctor and got her an appt. Everything looked good and they did an ultrasound. Its a GIRL! OMG...I have my eye on the prize now. I know what I am working so hard for. I am going to be a grandmother!

I lost my breasts, I lost my hair, I lost my job...in that order

But it is not as bad as it sounds. I worked for the government and because of Hurricane Katrina I was detailed to Washington but Gulfport remained my home in the world of government paperwork. Someone forgot to change it...teehee!

When I realized that chemo was going to be so rough and that I needed to be with my family during this time, I started looking at my options. I could apply for a disability retirement BUT if my agency could accommodate my medical needs, the disability would probably by denied.

I started the package and once I had completed my portion, I forwarded it to my supervisor to complete. In his portion my supervisor stated that they could not accomodate me because my position was being ABOLISHED! In the goverment world if they can't help you with a job of the SAME rank/pay/location you are considered unaccomodated. They were replacing my position with a position of LOWER pay! And the new position would be located in Washington. Hot dog!

My application zipped through the system and after FIVE days, I received a letter stating APPROVED!! It normally takes 30-120 days for an application to route through the system.

My retirement pay is 40% of what my normal pay was. A 60% cut is better than a 100% cut. At least I knew that money would be coming in and for now life would remain somewhat normal.

Hair everywhere...except on my head!


Prior to my first chemo they told me that I would start losing my hair between 17-21 days after the first treatment. They also advised that when it started to come out, just go ahead and shave it off. I thought that was strange but who was I to disagree??

Sunday morning, September 9, I woke up and my head was sore...like the kind of sore you get from a pony tail too tight or from wearing a tight hat. I brushed my hair, felt my head...no hair loss, just soreness. As the day progressed the soreness increased and when I woke up from a nap that afternoon, I noticed hair loss on my pillow. From that point on, my hair was coming out in clumps. It tickled, it itched, it hurt...it was a royal pain in the butt! I know....lets just buzz it off.

Well, you know Murphy's law? Sunday...not one hair place open so we were going to have to buzz it ourselves. Where are the clippers? Hmmm, Frank has them. Find the scissors. Ok, so there I stand in front of the mirror with a pair of scissors just cutting at my head. It looks horrible but it feels so good. As I cut, the soreness in my head magically disappears. My husband uses his nose hair trimmers to even it up as best he can.


The loss of my hair was the most fun we had experienced in weeks. We laughed, we cried...it was so cleansing.

For the first couple of days I tried all types of head coverings but nothing was comfortable and it was so obvious that I was wearing the head coverings to hide my baldness. I was in the bathroom, looking in the mirror and it suddenly dawned on me. I was going to make myself uncomfortable trying to hide something that everyone KNEW existed. Forget this....comfort is all I have right now, look out world...here I come...BALD. From that point on, the only time I wore anything on my head was IF there was a draft blowing over my head.

I was ET's sister, big eyes, bald and concave chest!

Sunday, December 14, 2008

Whoa...where did THAT come from?

In typical Mom fashion, I faced everything that was being thrown at me with a smile on my face and assuring my family that all would be ok. But you know what? Deep inside of me it wasn't ok and it was bubbling to get out. I did my best to contain it, I tried...I really did.

The days after the surgery are a blur. I wanted to return to normal, problem was...I didn't know what "normal" was anymore. I finally got a phone call that my first visit with the oncologist would be on August 15. Until that time, I could not answer questions that anyone asked me. I know that people want to be helpful but the worse thing you can do for a sick person is to ask them question after question. Will you have to have chemo? Probably so. How long will you have to have chemo? Don't know yet, will have to wait to see IF I have to have chemo. Will you get sick during the chemo? Don't know that I have to have it and haven't had it yet so I don't know. I finally quit answering the phone. I could still feel IT bubbling inside me.

My first visit I came with my husband and sister in tow. Strange thing...I had no questions...I just wanted answers. I could not have asked for a nicer oncologist. He told me everything about my tumor. Less than 1 cm, one positive node, estrogen positive, progesterone positive and HER 2 negative. In the case of breast cancer, positive is good except for HER 2 and there you want to be a BIG negative. Whew...so far so good!

Because I had lost weight and was so tiny he decided that I needed a surgically placed port in my chest. That procedure was scheduled for August 20th...the 21st anniversary of my father's death. First chemo...August 22. He explained what drugs I would receive and for how long, gave me lots to read and told me to call if I needed anything.

Ok...now I had the battle plan, it was time for me to put the "Rachael" touch on it. I read everything I could find on the subject of breast cancer, breast cancer and chemo, surviving chemo. I figured out what I needed to do to prepare my body for battle!

I listened to my body and ate and drank what it told me and when it told me. Avocados and water were the big cravings, juicy fruit and salads. I super-hydrated my body. Come on chemo...I am ready.

I arrived for my first chemo. They drew blood, administered the anti-nausea drugs, IV benedryl and the BIG GUNS...adryamaycin and cytoxen. I felt good...the whole process took about 2 hours and I was fine! I got home and still I felt fine. Dinner time and they asked me what I wanted....Taco Bell! What, they said? You don't like Mexican Food. I laughed and said I guess I do now...that is what my body wants. It later dawned on me that the "spice" was probably what I needed to help fight off the nausea.

The next week I had to return for blood tests. I was one of the unfortunate ones that has their white count whacked out with chemo. I had to get a shot everyday for 5 days. Good news was that I "automatically" qualified for one time only shot the day after my next chemo. Who makes up these stupid rules anyway?

I decided I needed to get some clothes that had easy access to my port, did not show the lack of cleavage and was loose fitting so that I did not feel the need to wear my falsies. JC Penney's here I come...salespersons beware. Yes...it did...It bubbled to the top and spilled out all over the JC Penney salesperson. Bless her heart, to this day she probably doesn't realize what hit her!

THE ONE

July 9...the date that THE ONE will reveal itself fully. But before we get to that I will tell you about my pre-op appoint with the surgeon.

He finished up with me and I was heading out the exam room door and there was an elderly lady standing at the desk saying...why can't I have the first slot? The lady behind the desk looked up, saw me and said...."because she has already booked it." This elderly lady looked toward me and said "oh my....you have breast cancer, too? I am so scared, are you?" I looked her square in the eyes and said "no, I am not." "There is nothing to be afraid of, we can't change what has happened to us...the only thing we CAN change is HOW we deal with it." She then told me her name and that her surgery was the one immediately after mine. She said she was scared and could she call me. I said sure and gave her my phone number.

She called me several times prior to the surgery, we were 2 doors down from one another in the hospital and to this date we are best of friends..even with the 30 plus year age difference. HE provided me with someone to "take care" when I needed it the most! I do better when I help...I like to give, not receive!

The morning of July 9th arrived and I reported to the hospital with my husband, sister and in-laws in tow. What no one could see, but I was aware of the fact that I had an angel on each shoulder. My momma and daddy! They were with me every step of the way.

The surgeon still felt it was an early cancer but I would have lymph node mapping done prior to surgery. With the mapping done, I headed for the OR. I do not remember anything of the next few hours but started to be aware when I heard the recovery room nurses talking about JCAHO being there for a visit and what did EOC stand for. The first words out of my mouth was "Environment of Care." They starting laughing, here I was post surgery for a double mastectomy and I knew more than they did!

I spent 2 hours in the recovery room and then was sent to the floor. By 2 PM that same day, I was out of the bed with my robe on, dragging the IV pole, no pain meds on board, walking from one end to the other. The nurses were in total amazement. I tried to tell everyone that I push through pain! I bet they will believe me next time!

The day after surgery, my physician came in to tell me that even though it was a less than 1cm tumor, it had already claimed a lymph node! Only one? Great....I can handle that!

I was discharged on day 2, had all drains out by day 4. The only thing that was looming was the visit with the oncologist and what journey I would be about to take!

THE ONE....less than 1 cm with one positive lymph node. I know who I will be fighting against now. Let the battle begin!

Everything happens for a reason??

At some point in all of our lives each of us has been told "everything happens for a reason." I have always been a believer of this and tend to approach things by finding the positive before looking for the negative. My newest quote is..."what doesn't kill you, cures you!" Anyone who has gone through chemo can relate to that!

Anyway...back to blogging. Everything happens for a reason. Ok, what reason could you possibly find for being separated from your family, friends, home, animals, etc and be positive about it? Hmmppphhh....I did. I looked at landing in Washington, DC as proof that I was alive, had a job and everything would get better with time...or would it?

From August 2005 - April 2007, I spent about 46 weeks a year in DC and 6 weeks a year with my family in Gulfport. I looked for any opportunity to visit home. Mammogram..sure book me. Ultrasound...sure, just tell me when and I will be there. I was probably more dilligent about my healthcare during this 20 month period than in my entire life! Ahhh...maybe THAT was the everything happens for a reason!

This is where the story gets strange. I was having to have every 6 month ultra sounds on my right breast and an annual mammogram. My husband called me in Dec 2006 and told me I had received a reminder from the doctor that my 6 month breast ultrasound was due. I called and scheduled the appointment during my Christmas visit home. When I called the physicians office I reminded them that I was working in DC and to please schedule everything I needed during the period I would be home. She told me she would. So..off I go to the ultrasound and my doctor's appointment was 3 days later. The doctor felt that my right breast was doing fine and I should just return to my annual mammogram and that would be just fine. I was relieved!

Now...remember me saying I asked the doctor's office to schedule EVERYTHING I needed for the time period I would be in Gulfport? Guess what...she didn't! The day before I was due to leave I get a card in the mail that says "it is time for you annual mammogram." I had meetings booked in DC so there was no way I could change my departure date so I decided that I would just have the mammogram on my next visit home since the breast they had been watching had been "discharged" and returned to routine. Everything happens for a reason??

When I returned to DC, I called the doctor's office and scheduled my mammogram for April. Life rocked on in DC. That was a busy time frame for me and the days just flew by. Fast forward to April.

I went to my mammogram appointment and had an appointment with my physician 3 days later. When I walked into the office, the manager noted I was "late" with my mammogram. Hello?? I asked you to schedule everything I needed for my December visit. Everything happens for a reason??

The doctor said he thought everything was ok but because he and the radiologist disagrees on what they were seeing, he felt a biopsy would be in order. I had a rather active schedule in DC and asked if I could have it done the first week in June? He said sure....he didn't see a need to get all rushed about it. Everything happens for a reason?

I returned to DC, informed everyone of the situation and plunged back in to "LIFE IN DC". During this period of time I really didn't reflect much on the looming biopsy. Everything happens for a reason??

June 5th arrived and I was back in Gulfport for my guided needle biopsy. Let me tell you ladies..a mammogram is a walk in the park compared to this procedure. The actually GUIDE a looonnnnngggggggg needle into your breast to the areas they are wanting to focus on and then they do a mammogram with this lloooonnnnnnggggg needle still in your breast. And you are AWAKE!

Three days later finds me in the doctors office where I hear the dreaded words..."you have cancer." The doctor was optimistic. He said the malignant tumor in the right breast was less than 1 cm in size so he felt it was a very early stage cancer. He told me I could opt for a lumpectomy if I wanted. I looked him square in the eyes and said.."hell no...take this sucker off and while you are at it, take the left one too!" He told me he routinely does NOT remove an unaffected breast but since I had been his patient for some many years and every year I asked for a preventative mastectomy, he would do it if I was sure. I looked at him and laughed...you can't have the right without the left...I am having a BOGO sale on my boobs! The surgery is scheduled for July 9, 2007. Still I am amazingly calm!


So reflect back to December 2006 when the doctor took me off the 6 month watch and the nurse DID NOT schedule everything as I requested. If I had done the mammogram at the same time as the ultrasound, would they have found the early cancer or would it have been discovered the following YEAR and been not so early? Everything happens for a reason?? YOU BET IT DOES!

The Start of My Journey

I always knew that breast cancer would be in my future. My mother died of breast/bone cancer in February 1987. Since I was built so much like her I felt that I would be the one! I lived with the annual fear of "is this the year?" since I was 30 years old. Somehow I never thought beyond that fear.

I was diagnosed with fibrocystic breast disease when I was 32 years old. I went to the Susan Komen Center for Breast Cancer when I was 40 for a holistic evaluation. At that time my risk for breast cancer was thought to be about the same as any woman, despite my mother having died from the disease.

I always thought the left breast would be the one to develop cancer. The Butt sisters lived in that breast. They were 3 BIG cysts that would fill up with fluid, lock their butts together and just have a good old time. They had to be drained several times and the only way the middle sister could get rid of her fluid was for them to insert the needle through the outside sisters to get to her. I kept many a technician in stitches talking about the Butt Sisters.

But while I was entertaining the technicians the right breast was slowly cultivating THE ONE! The strange thing is that right after my mother died I found a very small lump in this location but the doctor could not feel it nor did any future testing reveal it until 2007. Could my mother have caused THE ONE to rear its head for a warning?

My life as a full time, working mother/wife kept me busy. By 2002 I had received several promotions and was now traveling between Washington, DC and Gulfport, MS working for the Armed Forces Retirement Home. My life was hectic but it was just the CALM before the STORM.

My husband was diagnosed with Prostate Cancer in 2004. He had his prostate removed at the age of 48 but we were so blessed that it was contained and they were able to get it all. We felt that surely 2005 would be a better year for us. But again, it was just the CALM before the STORM.

Hurricane Katrina hit on August 29, 2005. I was locked in the Gulfport facility during the storm with my husband, children, dogs and in-laws hunkered down at our residence. This one 24 hour period forever changed my life! The facility was 24 feet above sea-level and very, very well built. We were considered to be such a secure location with ability to generate electricity by generator and water from a well, that Jim Cantore and the Weather Channel stayed with us during the storm. Needless to say, Hurricane Katrina thought differently and by 8 AM that morning we were walking in 2 inches of water. The Gulf of Mexico was beating at our feet! The rising surge caused the generators to flood out so there we were....120 staff/family and 450 residents in total darkness. Because it was breakfast time most every one was on the first floor when the power went out and the generators flooded so we had to evacuate everyone UP via stair wells.

HE revealed himself to me during the height of the storm and I suddenly felt so peaceful. I knew we would survive. By the next night I was on one of 9 buses filled with elderly residents and 2 staff members per bus...heading to where my NEW life would begin and to the time that THE ONE would announce its appearance!