My Mastectomy. Breast Cancer journey almost over.

Are you facing treatment for Breast Cancer?  Have you been filled with horror stories about what is ahead for you?

Chemotherapy or radiation therapy?  There are frightening stories of people constantly vomiting and being severely nauseous from the Chemo.  Humiliated and discouraged over the loss of head hair.  Having no strength or stamina to take care of normal everyday duties.  Fatigue that is constant and debilitating.  The kind which you can’t get out of bed except to go to the bathroom and that is difficult in and of itself.

I don’t have any experience with the radiation therapy, as of yet.  So I can’t speak to that treatment.

If I had to recommend a place to be treated for breast cancer, it would be OU Medical Center in Oklahoma City, Oklahoma.  The OU Physician Center, Stephenson Cancer Center, OU Surgical Center, OU Medical Center, and Stephenson Infusion Center have the most caring staff I have ever dealt with.

From my experience, my attitude had everything to do with the low amount of side effects I had with all of my treatments, from the initial diagnosis.  Pain was at a low level and was tolerable.  That is until my last rounds of Chemo when I was switched to a different type.  My breast cancer was a temporary medical problem. The end result was always going to be a mastectomy.

Look, to be honest, the process is a bit scary.  What are the doctors and nurses going to be doing to me?!  Does my boob get whacked off today?  When does the Chemo come in?

You can do tons of research on the internet about breast cancer and the treatments of it.  Every person is different, and every cancer diagnosis is different.  Treatment protocols are different depending on the cancer Stage and type.

Let me tell you!  There are many different types of breast cancer.  I thought there was just one…breast cancer.  Check out this page from breastcancer.org “Types of Breast Cancer.

Some people have an attitude that “This is only temporary and won’t rule my life forever”, while others are totally freaked out by the diagnosis and have an attitude that is, more or less, “Poor me.  My looks are going to be ruined and no one will ever love me again!”

Some people have a very low tolerance for pain.  The growing cancer tumor in the breast would, possibly, be extremely painful to some.  For me, it was a sporadic slight burning sensation that lasted from one to two seconds in the beginning.  Later, as it grew the burning pain would last longer even though it was still sporadic – not a constant pain.  Up to 10 seconds.  It was very uncomfortable.  Not so uncomfortable that it stopped me doing my  normal daily activities or interfered with my truck driving job.

I had my first breast biopsy on June 27, 2016.  Ultrasound guided breast biopsy is what I had.  I had several of this type of biopsy done before Chemo started.  I was given a local anesthetic for each biopsy to lessen the pain caused by the steel needle injected into the breast and directly into the cancerous tumor.  Three core samples were taken with each biopsy.  The next day my breast would be painful and I would need a pain pill – two at the most for the week.

I had a PET Scan on July 22, 2016.  This scan was from my head to about mid thigh to see if my breast cancer had spread to other parts of my body.  Being a 40 year pack a day smoker the scan would spend quite a bit of time on my head and chest area before going down to the lower extremities of my body.  My head and chest were clear of any worrisome markers.  My stomach had a spot that needed to be checked, there was a questionable spot on top of one of my kidneys, and there was a dark black spot on my right hip bone that would need to be checked.

On August 8, 2016 I had a Bone Biopsy of my right hip joint.  Each of these radio-logical procedures were a bit frightening to me.  I had not had prior experience with any of these giant machines and didn’t know what to expect.  Having a bit of claustrophobia I was more terrified of being stuck in a tight tube than I was of the procedures.  The results of the hip bone biopsy were negative…no cancer in the hip.

On August 11, 2016 I had a Stomach Scope to check the dark spot shown in the PET Scan.  Turns out I had a bit of an ulcer which was treated with a course of antibiotics.  No cancer in my stomach.

On August 19, 2016 I had another breast biopsy and my first round of Faslodex shots to stop the growth of my cancer.  My cancer tumor was continuing to grow, causing the underside of my left breast to be swollen and purple.  My type of breast cancer was hormone related.  Meaning that this cancer fed off of estrogen in my body, and sugars from my liver.  The Faslodex would inhibit estrogen from being made in my body.

On September 2, 2016 I had my second round of Faslodex.  Turns out this treatment was not as effective as my doctors had hoped it would be.

I had another breast biopsy on September 24, 2016 to see how much growth the tumor continued to have.  It was growing quite a bit and was very uncomfortable.  On September 26, 2016 my Oncologist, Dr. Sobia Nabeel,  decided that I would be put on a Chemo regimen.  That would be determined after I had a Heart Scan.  This scan would let my Oncologist know if my heart was healthy enough for the rigors of Chemotherapy.

On October 7, 2016 I had a surgical procedure to install a Chemo Port in my right upper chest.  This was done as an outpatient procedure.  It was quite uncomfortable for a few days after it was placed under my skin.  I had some difficulty sleeping on my right side with the port being in the way of my comfort.

Chemo Port implant

Chemo Port implant

October 12, 2016 began my Chemotherapy treatments of DoxirubicinYou can read my blog post about that here.  November 1, 2016 I was admitted to the hospital for a Urinary Tract Infection that had gone septic.  I spent November 1 to 6 in the hospital under very good care.  The fluids they pumped into me caused my body to swell until I thought I was going to POP!  October 26, 2016 was my second round of the Red Devil – Doxirubicin that lead to the UTI and subsequent hospital stay.

Just so I know that they have the "Big Guns" going...I guess

Just so I know that they have the “Big Guns” going…I guess

December 23, 2016 my chemo drug was changed from Doxirubicin to Paclitaxel or Taxol.  My last Taxol treatment was on January 23, 2016.  This Paclitaxel or Taxol as the nurses called it, was supposed to be not as bad as the Doxirubicin.  I had not had any bad side effects with the Doxirubicin, other than losing my hair.  So in my way of thinking the Taxol was going to be a breeze.  Uhm, not quite.  I had a lot of bone pain with the Taxol.  I swear, there was someone in the Stephenson Cancer Center that had a voodoo doll made just for me.  That person had one job and that job was to jab a pin in the doll at any place they wanted and for how long they wanted.

The pains from the Taxol were sharp, intense, and lasted no longer than 10 seconds.  That 10 seconds was quite exciting!  The little bone at your outside ankle, know where I’m speaking of?  That was one place that would be frequently hit by the sharp, intense, pain.  Within minutes after the ankle, between by ear lobe and jaw bone the next pain would show up.  That one brought me up in my seat or stopped me from moving.  A few minutes later my left mid thigh bone – femur I think it is called – would have the sharp and intense pain.  Not quite as bad as Liam Neeson had done in the movie Taken.  Just in the same general area.

After that last chemo treatment my doctor visits began to slow down.  I have not had any further breast biopsies.  I did have a Mammogram of both breasts on January 24, 2016 to see if the cancer was still growing or if the chemo drugs had done their job.  The radiologist came to me after the procedure was finished to say, had there not been a marker placed in my breast during the first biopsy she would not have known that I even had a cancerous tumor.  There was nothing there.

Although the Chemotherapy was rough on my body….tired all the time, extremely low energy levels, not being able to keep up with daily household chores, and being knocked down and out if I overdid some housework.  Which means if I spent longer than 10 minutes on housekeeping duties for the entire day then I was whacked for that day and into the next.  I did not have a lot of trouble with the Chemotherapy.

The next part of my cancer treatment was to have the Mastectomy.  When a breast gets lopped off, how does the surgeon put skin back over the wound?  That is the question I asked my surgeon’s nurse.  She had to hide a giggle at my question to remain professional.  🙂

The procedure is not what I had envisioned.  My surgeon, Dr. William Dooley  has been so good at explaining everything to me.  He has a tall cart with a laptop.  He types stuff as we talk about my tumor growth, the Chemotherapy, the biopsies, why I have the same shot of pain in the exact same area of my right breast as I have with the cancerous left breast.  Per Dr. Dooley, the nerves coming from the spinal column at my breast height connects the two breasts together.  What one feels the other does as well.

On the day of my Mastectomy he took a bit more time to let me know what he was going to do.  He was going to cut all the way,  horizontally, across my left breast to near my arm pit.  The skin was going to be rolled upward to my collar bone and the lower skin was going to be rolled down to my ribs.  Dr. Dooley would then remove all the of the breast tissue, go down into the muscles to take some of them away, and then go into my arm pit area to remove the lymph nodes both Dr. Nabeel and Dr. Dooley found to have cancer in them.

This whole procedure was done in an Outpatient Surgery Center.  Once I came out of the Recovery Room without any problems I was taken to a monitoring area while the drugs were further wearing off and I was no longer talking gibberish.  Joe was waiting for me when I arrived.  About 30 to 45 minutes later I was discharged and sent home.  I was home at a little after 1:00 p.m.  Surgery was at 8:15 a.m., we were told to arrive at 6:30 a.m. for all the prep needed before the surgery.  So all tolled it was 6 1/2  hours then home.

My left breast is sunken in the center.  I have two drains, one comes from way up in my arm pit and the other comes from the surgical area.

 

Image result for mastectomy drains

Photo courtesy of Susan G. Komen Mastectomy The Procedure.

I have to drain the bulbs three times a day and record the amount of fluid removed from each bulb.  Joe is really good at doing this for/with me.

I have the most comfortable bra on…yes you read that correctly!  It has two pockets that hang down from the bra.  The pockets are to hold the drain bulbs.  Why, oh why, did it take having a mastectomy to find a bra that fit well?!

Image result for mastectomy drains and bras

Photo courtesy of Surgery Supplements.

Dr. Dooley told me I would have “muscle spasms” that would burn.  Let me tell you, he got the burn part right but I don’t know if it is muscle spasms or not.  At my arm pit I will get one (excuse me) hellacious burning sensation that lasts about 15 seconds.  Typical example is a burn from the hot oven when your arm touches the oven rack.  That kind of a burn sensation!

I have read in the literature supplied to me that it will be several WEEKS of recuperating from this major surgery.  I am not to life anything that weighs more than a gallon of milk – about 8 pounds.  No strenuous activity.  Lots of rest.

I do some of the cooking.  Joe has done a bit of it as well.  He asks if I need help, or he will ask if he can help me.  He doesn’t make a nuisance of himself asking me that question frequently.  I get really testy and nasty if he does that.

As far as actual “PAIN” goes.  I’ve had a C-Section and that pain is bad enough to make your ears ring and you cry for days.  I don’t have that kind of pain with this mastectomy.  The reason I think is because with a C-Section your stomach muscles are used to sit up, stand up, walk, bend over, reach for things, and just general all around use of the muscles.  The chest muscles are not used so much as the stomach.  Thus, almost no pain.  That is until I press on or near the surgery site.  YIKES!  OUCHY, OUCHY, OUCHY!

All in all, I am doing well.  This seven month journey has not been all bad.  I have been blessed with professional help all along the way.  Doctors, nurses, reception staff, and all the other support staff in the Infusion Centers, Oncologist and Surgeon office, medical testing areas – radiological testing and procedures.

All this to say that I am doing well and nearing the end of my breast cancer treatment.  Although everything that has happened and been done in this treatment regimen has not been terribly bad….I don’t want to go through this again that is for sure.

Well that is my refresher on events and a current update.  This has been three days in the making and it is now finished.  Blah blah blah I know.

Leslie

 

I have Breast Cancer.

This post is directed to those of you that are NOT covered by insurance and have found a lump in your breast.  This is my story.

Being Self Employed and owning your own business is not exactly the money machine some people think it is.  Sometimes it is no different than you living paycheck to paycheck.  We have a few months in a year that allow us to get a month or two ahead on our mortgage and other bills.  The remainder of the year is a drive and push just to stay current.

Joe is on Social Security and is covered under his Medicare Insurance.  I on the other hand have no insurance.  The monthly premiums of $600 to $800 for Health Insurance has relegated this expense to a “Luxury” item and not as necessary as our mortgage payment to keep us from being homeless.

My health is good.  I don’t live a healthy lifestyle, by  any means.  I don’t exercise regularly nor do I eat properly.  I have been blessed with good genes that enable me to thrive and contribute to society and enjoy my family and friends.  I don’t see my personal physician as often as is necessary.  I only go to see him if I think “I am dying”.  Which tends to mean I get to listen to a lecture at each infrequent visit.

I do the monthly breast self exams, rule out any non threatening symptoms of reproductive health issues by doing research and finding over the counter medicines to deal with yeast infections or odd and infrequent pains in my lower abdomen.  So I have made myself a defacto doctor with no qualifications.  So I am a “Fool” as a patient.

In early December 2015, I noticed a lump in my left breast when I was in bed one night.  I thought it was the bed clothes all bunched up.  That lump had not been there in any of my previous self exams.  While lying in bed I did a thorough self exam and did, in fact, find a lump about the size of a large grape.  It was located below my nipple and under the center portion of my left breast.

“What do I do now?”  This was at once frightening and bigger than life.  How long do I have?  How fast will this grow?  How am I going to get treatment?  I have no means to pay for any of the procedures.  I don’t have Insurance to help with the costs of treatment.  There won’t be a doctor anywhere that will take me as a patient with no Insurance.

I chose to keep this finding to myself and not tell my husband nor my family.

Over the months I kept a close watch on the growth of this lump.  I dug through the internet for information on Breast Cancer.  Symptoms, normal signs, what to look for, what alternatives did I have?

The lump remained the same size through December and January.  The lump could be moved if it was uncomfortable when I was in bed.  I found I could shift it to a different location when I laid on my left side and had discomfort.

February the lump became the size of a walnut.  It was not as easily moved as had been previously but I could still make myself comfortable while in bed.

I watched for any of the signs indicated in my research.  My nipple had not inverted (gone inside).  I had no orange peel texture to the skin of my breast.  I had no pain.

March the lump increased in size to an apricot and was hard.  It was no longer movable.  I could no longer shift it to a different position within my breast.  I looked for further signs as indicated by my research.  The nipple was still as prominent as the other breast.  No discoloration of the skin, no orange peel texture, and no pain.

Mid March I began to feel a “Hot” sensation in my left breast.  It was not painful, just odd.  I would get a burning and stinging sensation which would be varying degrees of intensity.  Nothing that a couple aspirin would not alleviate.  The lump was getting harder and more defined at this time.

April, the frequency of the burning and stinging sensations increased.  At times the sensation would last nearly the entire day, then disappear for a week.

May brought changes that were actually seen.  My nipple flattened, looked as though it were being pulled inward.  It still protruded slightly but had not totally inverted.  The lump was growing more and was getting harder.  By the end of May the lump was now the size of a large jalapeno pepper.  It was no longer round, it was elongating.  Located below my nipple and grew to both sides of center, as well as downward to the breast and chest wall.

June changes were even more noticeable to me.  My left breast was getting larger than my right breast.  When I raised my left arm above my head there was a definite flat line or demarcation of where my breast was different from the right breast.  Almost like a shelf holding up the roundness of my breast, where the right breast was normal and spherical.  Also, I  had a purple bruising or mottling of my skin under my breast about the size of a “Cutie” orange.

Over the months, when getting ready for bed in front of Joe I would pretend that I was looking for or at something as I disrobed.  Keeping my back to Joe and I dressed or undressed so he would not have cause to ask any questions.  June brought about changes that were now going to be harder and harder to keep this from Joe.  I knew he was going to ask what was wrong with me because one breast was very much larger than the other one.  There was also some dark pink discoloration (like a blush) on the outer skin of my breast on top.

While in California during our next to last delivery I decided to tell Joe.  His reaction made me wish I had kept my mouth shut.  The fear in his words and tone was unmistakable.  Fear and anger at me for not letting him know sooner was extremely hard to watch and listen to.

“Why didn’t you tell me sooner?” was his one demand.  My answer was “We don’t have the money for treatment.  I don’t have Insurance to deal with this.”

The next day I told one of my daughters while he told one of our other daughters.  That was not pleasant.

Although our daughters were shocked and upset with me for not telling them sooner, the two of them began telling me of my options even though I don’t have Insurance.  They helped me to understand that I could get treatment and survive this ordeal because there are hospitals and facilities that specialize in Breast Cancer that have alternative methods of payment.  Some facilities offer “Grants” to patients that can’t afford proper treatment and diagnosis of Breast Cancer.

Teaching hospitals would be the best route for me to go.  They have staff, both medical and financial, that can help the Un-Insured get the proper treatment necessary.  I would have to surrender to being a “Teaching” patient for the doctors and nurses in training but I would get the same care as anyone with Insurance would get.

An appointment with our Family Doctor was made for the Monday after we arrived home from our job.  He has treated me for years knowing I don’t have Insurance.  I pay as I go with him.  Being faced with this huge obstacle it was my doctor’s recommendation that we go directly to the Oklahoma University Emergency Center in downtown Oklahoma City.  He cautioned that there may be a long wait before I would be seen and diagnostic tests could be performed.

Let me tell you….I was more scared of being turned away for lack of funds or no Insurance than I was about any Cancer diagnosis.  I was terrified of being labeled a “Dead Beat”.

My experience was, shall I say, Unusual!  Within minutes of approaching the reception desk I was called to be fitted with the newest fashion in bracelets.

Hospital admission bracelets

Hospital admission bracelets

Less than an hour later I was taken for an invigorating ride in a wheelchair to the Ultra-Sound department.  The young, petite, woman that was taking me to my  next destination was quick of step and had exceptional reflex timing as she avoided nurses with trays coming out of rooms.  Visitors and patients wandering the hallways.  Avoiding collisions with the nursing staff at their stations when leaving the area for their rounds.  The labyrinth of hallways and corridors she took me down were numerous.  I was informed of bumps to be encountered in the floor as we wended our way along.  I can only liken this exciting tour as “Mr. Toad’s Wild Ride” without the accident at the end.

After the Ultra-Sound was performed the technician told me she would be contacting a Radiologist to look over my pictures before I would be sent back to the waiting area of hospital admittance.

That ride was a bit more sedate.  The young man who was in charge of my tour was just as adept as the young lady was….just not as swift of foot.  He was very kind in his manner.

Once arriving at the waiting area of Admittance section I was greeted by the “Traveling Intake” technician.  I had seen her on the various floors and hallways I had recently been on.  With her mobile desk and computer she was getting information from patients and requesting their signatures.  She was now tending to me.  Getting me ready for whatever was next.

The Intake Technician had not quite finished with my information when we were beset by a nurse who stated I had to go “IMMEDIATELY” to the Breast Institute for a Mammogram and other testing.  Someone there had opened a slot for me to fit in.  I was informed that is was “Highly Unusual”.

Joe drove me to the next complex.  There I was given a very fancy designer top to replace my blouse.  I would be having a Mammogram.

Dressed in my designer top.

Dressed in my designer top.

I’ve NEVER had a Mammogram.  I was terrified of this.  I have heard all the horror stories of this pain inducing machine.  The woman that tended to me was very caring and she was informative.  She explained how it worked and told me what to expect.  Another experience of the day that was more terrifying in my mind than it actually was.

The Mammogram machine

The Mammogram machine

After the Mammogram was completed I was taken to another room to have another Ultra-Sound and biopsies performed on the lump in my breast as well as in a Lymph Node.  Joe was in the room with me during this procedure.

Getting biopsies of my breast tumor and Lymph Node

Getting biopsies of my breast tumor and Lymph Node

Right after the biopsy tissues were removed I was told by the Surgeon present (on the right) that my lump could be malignant.  Tests would be done on my tissue samples to verify this and determine what type of Cancer I have.

For any of you that have found a lump in your breast and are faced with this life changing event.  Those of  you with NO INSURANCE and feel you have no where to turn for help.  Get with your Family Doctor, or a doctor you trust, and ask what can be done for you.

THERE IS A WAY FOR YOU TO GET THE TREATMENT YOU DESERVE.  Let my story be a guide to you in getting the necessary help sooner than I have done.

I am in the process of waiting for the actual lab results as to which type of Cancer I have.  Will I be treated by Radiation, Chemotherapy, or Hormone Blockers before surgery is even considered.  I have been in consultation with a “Nurse Navigator” that is helping me to find the best Surgeon to determine my treatment.  She is working with my financial information to see which Grants I can use for my treatment.  And even if I have to go the route of being on Medicaid during my treatment.

Ask you Doctor or contact your local Health Department to find the FREE MAMMOGRAMS offered for Breast Cancer prevention and assessment.  Find your local Teaching Hospital and let them help you with getting a free or low cost Mammogram.  If you live in the Oklahoma City area you have access to the Free Mammograms at OU Breast Institute.  Call and make an appointment.

Leslie