Sharpie happy team of Radiation Therapy Nurses.

I was always told not to write on myself or the ink will poison my blood and I would get really sick.  Uhm…no one seems to have told my team of Radiation Therapy Nurses.

I have a line drawn down my sternum.  Kind of looks like an off kilter butt crack.

Sharpie mark on my sternum

Sharpie mark on my sternum

I think the nurses are going to be playing a game of Tetrus on my upper belly instead of doing Radiation Therapy as I have been lead to believe.

Maybe a bit of Tetrus being played

Maybe a bit of Tetrus being played

Maybe some drunken pirates couldn’t remember exactly WHERE “X” marked the spot on my map.  I have an “X” in my left armpit and one to the front of my left underarm.  This is where, I’m told, my lymph nodes are that are being treated.  Likely story.

Which "X" actually marks the spot?

Which “X” actually marks the spot?

I have an “X” from last Friday when I went for my initial CT scan on the outside rear of my right side.  A new one was added to the outside rear of my left side.

Rear outside of my left side

Rear outside of my left side

Rear outside of my right side

Rear outside of my right side

No one has even signed their artwork!  Can you imagine that?!

I have been told that I will get a burn, similar to having been outside in the hot sun, before the week is out.  I have been given a lotion that I have to use each night before I go to bed.  The radiation is going to not only burn my skin, it will also dry it out.  Hot damn!  We are going to have some fun now.  I also have a cleansing foam that I have to use on the area being radiated.

Lotion and skin cleanser I have to use during radiation therapy

Lotion and skin cleanser I have to use during radiation therapy

After I got home from my trek to downtown Oklahoma City for my first treatment, I spent a few hours working on my IKEA drawer sets.  I’m liking how they are coming together.  I was not so very sure about the color choices Pantone has put together, but now I do have to say they are quite pleasing to my eye.  The colors I am using are in their “Grand Canyon” collection.

Close up view of the paper covered drawers

Close up view of the paper covered drawers

Unfinished drawers at the bottom still

Unfinished drawers at the bottom

I’m going to keep working away on this project.  I probably should be putting some things in the drawers as I get them finished.  There are some drawers with contents inside, I just can’t remember what is in them right now.  I may have to put some kind of fixture on the front with a label to remind me.

Well, off to my second radiation therapy session.  I wonder if there will be more drawings made with the Sharpie?

Leslie

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

 

Breast Cancer Update – January 8, 2017

I have two more chemotherapy treatments to finish this part of my breast cancer treatment.

The first round of chemotherapy was with Doxirubicin, otherwise known as the “Red Devil”.

Doxorubicin - Red Devil

Doxorubicin – Red Devil

I am now midway through the next chemotherapy phase, known as Paclitaxel or “Taxel” for short.  This chemo has its own bag of nasty tricks.  The “additives”, I’ve been told, cause many immediate side effects that have to be monitored by the RN administering this drug.  Hives, red rash, trouble breathing, and unsafe effects on the bone marrow to name just a few.

The RN monitors me for 15 minutes as this chemo is administered.  I have to let the nurse know if I feel like passing out, have chest pain, a fast heartbeat, she watches for signs of flushing (face turning red), a slow heartbeat, a bad headache, any belly pain, upset stomach or needing to throw up, and a few other things that would require immediate intervention.

There is a bell placed next to me on an arm rest table.  The kind of bell one sees at a hotel front desk.  I am instructed to begin dinging that bell when I begin to have any of the side effects associated with this wonderful chemo.

To counteract these side effects I am given a dose of Benedril through my Chemo Port.  That stuff knocks me out within a mere minute or two.  I couldn’t ring that bell if my life depended on it.  That is why the RN hovers for 15 minutes over me.

Chemo day is about six hours long in the chair.  About three of those hours is spent in La La Land.

At the start of my chemo treatments my breast was swollen and purple.  The whole things was hard as a rock.

My left breast

My left breast

Now the breast has pretty much gone back down to normal.  The purple is gone and the tumor has shrunk quite noticeably.

My breast after chemo therapy

My breast after chemo therapy

With both the Doxirubicin and the Paclitaxel I have to have a dose of Neulasta 27 hours after the chemo.  This little device is placed on my stomach and remains there until the drug has been administered.  There is a green flashing light as the little machine counts down the minutes to deliver the dosage.  In the dark of night that light is quite bright!

Neulasta

Neulasta

This photo was taken long ago….when I still had hair.  When it is time for the drug to be  given the machine makes a tone of four beeps.  It takes a few minutes before it is finished and another set of tones go off to let me know it is done.  That little bugger has a needle that plunges into me shortly after it is placed on my body.

When the time is up and the drug is finished I get to take it off.

The needle of the Neulasta machine

The needle of the Neulasta machine

I had been told I would experience “bone pain” from both the chemo and the Neulasta.  Nobody told me there is a “Voodoo Doll” someone is in control of.

Voodoo Doll for my bone and body pain

Voodoo Doll for my bone and body pain

Throughout the days and nights I get sharp, piercing,  pains which last 8 to 10 seconds.  Below my ear (right or left) at the jaw.  In a hip joint (right or left).  Deep in the collar bone (right or left), any one of my ten fingers will get a pain so intense that gets worse when I shake it.  An ankle (right or left) will be shot with pain.

This is an all day, everyday, thing.  There is no rhyme or reason for the sharp pain.  Nothing that can be counted on, like a localized ache or pain.

Then there is the most irritating one of all.  During the night I will get a Charlie Horse in the middle of my back.  A circle of muscular spasms that hinder my breathing.  This bonus lasts up to six hours and there is nothing I can do to stop it.  If you have ever had one of those really good stretches.  You know the one with your whole body involved in the stretch.  It feels so good….until you get a muscle spasm.  Well just think of that discomfort lasting for six  hours.

I don’t get much sleep due to these aches, pains, and spasms.  I tried to not be such a pain in the butt during the Christmas and New Year festivities but I could not help myself being grumpy, testy, and wanting to find a hole and crawl in.

I have not been on Facebook during this time.  Each time I make an attempt to catch up with all of my friends and family I get overwhelmed by the whole flaming mess of this thing.

I’m trying to work up the energy to make the next video in my series of “Envelope Mini Album – Kathy Orta Style”.  The last video I really SCREWED UP big time in one of the steps I did.  I have to get that corrected and show the fix…..or what to do instead of what I said to do.  Good grief.

It has taken me well over a week to make the three signatures.

Three signatures for the Envelope Mini

Three signatures for the Envelope Mini

The spine pieces made to join these signatures together.

The four spine pieces

The four spine pieces

I’m not sure when I will get this ready and  uploaded to my YouTube channel.  Today I have some energy to spend in explaining my long absence from all of my friends and family.  Please be patient with me.

I have my next to last chemo treatment Monday – January 9, 2017.  My last treatment will be on or around January 23, 2017.  On January 24 I will have a consultation with my Surgeon to set a date for my Mastectomy.  So please don’t count on me to be an active player in Social Media for at least another several weeks.

Thank you all for your patience and your concern for me.  I appreciate each and every one of you very  much.

Leslie

My first dance with the “Red Devil” – Doxorubicin

I have Stage 3 Hormone Receptor Positive – Invasive Ductile Cancer….or something like that.  Cancer in the left breast which started in a duct and has grown outside and into the surrounding tissue, nearing the outer skin.

I have been treated with Faslodex, which is a set of chemotherapy shots to target the Estrogen hormone in my body which feeds the breast cancer.  I had three treatments of Faslodex.  My doctors were concerned that this treatment was not working in the manner they had hoped for.

Today – October 12, 2016 – is my very first IV Chemotherapy treatment.  What am I feeling?

  • A bit scared
  • Heard way too many horror stories of chemotherapy in the past
  • Feeling a bit separate from my own body….not quite out of body but like a different personality is taking over….One that is calm
  • A bit worried about excessive pain, vomiting, and a lot of discomfort

I was instructed, several days ago, to take one of the anti-nausea pills several hours before the chemotherapy treatment.  Take one of my $250 pills at 7:00 a.m. before we leave for my 8:30 appointment with my Oncologist.

Anti-Nausea Meds

Anti-Nausea Meds

On our way out to join the craziness of interstate commuters at rush hour going into Oklahoma City….we were greeted by a beautiful sky with the morning sun reflecting off building clouds.

Morning cloud cover

Morning cloud cover

After seeing my Oncologist’s Physician Assistant, who is amazing by the way, I was ready to begin this journey.  I had to call the Chemo Desk to let them know I would be late for my 9:00 appointment this morning.  I was just down on the second floor for my 8:30…..look everyone is doing their best to get me seen and cared for.

It is my responsibility to alert the next appointment when there are delays.  Most people don’t see it that way.  “Hey, it’s not my problem.  I was early to my appointment.”  Who knows if, or when, someone can call my next appointment….even one floor up.  I can do it myself and know that it has been done.

Okay.  I have to be totally honest here.  When I arrived for my Chemotherapy appointment, weighed in, was asked to choose a place to be seated throughout the treatment, and informed of all the beverage and snack options available to me….I was beginning to feel a bit of TMI going on.  Once the Clinical Nurse Specialist – an AMAZING WOMAN – came to tell me about the various drugs I would be getting this morning and their side effects….She asked me if I understood what she had just told me.  Ya.  Uhm.  Okay.  Actually this is what was going on.

Information Overload

Information Overload

Doxorubicin (doks oh ROO bi sin) is a generic name for Adriamycin.  This stuff is SO TOXIC that 550 mg is my LIFETIME dose!  For the rest of my life I can’t have one more drop of this stuff.  EVER!

The favored name of this drug is “Red Devil” or “Red Death”.  Do you feel comforted by this information?!  I think that is when the train wreck happened.  I did a lot of nodding from this point on while I most likely had a glazed over blank stare.

This drug is preferred to be administered through a Chemo Port (of which I have one).  The nurse who will be giving me the drug needs to make sure they actually SEE blood coming back into the line as they go from one dose to the next.  This is to insure the drug is in the vein and not out in tissue.

Are you ready for this?!  If this drug gets out into the tissue it will EAT IT!  This drug is a “Vesicant” – a chemical that causes extensive tissue damage and blistering if it escapes from the vein.

Doxorubicin - Red Devil

Doxorubicin – Red Devil

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

The most common side effects (30% of patients) of “Red Devil” is pain along the site where the medication was given.  Nausea and vomiting.  Low blood counts.  Both white and red blood cells have to be monitored.

This drug has long term possible side effects as well.  Heart damage, and Leukemia are two of the major possible side effects.  Another one is Tumor Lysis Syndrome where the tumor dies so quickly the kidneys can’t cope with the amount of dead cancer cells pouring through my system and into my kidneys.  This can be the cause of kidney failure.

The first five to eight days after Doxorubicin treatment – I and my bodily fluids are TOXIC WASTE!

  • Flush the toilet twice, with lid closed, after each use.  Wipe toilet seat, lid, under seat, porcelain rim and sides.  After each use.
  • My clothes are to be washed separate from Joe’s clothing and/or other household laundry.
  • Bed clothes laundered twice.  One cycle of regular soap and heat temp.  Second round water only to flush out the toxic night sweats.
  • No kissing Joe – my mouth can have sores and some bleeding.
  • Wash hands constantly, or use hand sanitizer…constantly.  Optimally do both.

Within 10 to 14 days my hair will fall out.  ALL OF MY HAIR.  From the top of my head to my toes.  Yes.  Possibly eyebrows, eyelashes, PRAISE THE LORD MY OLD LADY BEARD WILL BE GONE!, arm pits, pubes, legs, and any other hair that I don’t even know about will be shedding itself.

Tomorrow – October 13, 2016 – Joe and I are going to a hair salon that will donate my  hair to Pantene Beautiful Lengths – I have 8 inches of hair to whack off.  Some of it is gray or graying but a large portion of it is brown.  So, don’t be alarmed when you next see me with very short hair!

Pantene Beautiful Lengths provides human hair to wig makers for cancer patients that need wigs.  I had originally intended to donate my  hair (and have done this in the past) to Locks of Love.  This organization is for young girls and women who suffer from permanent hair loss at a young age.  Alopecia Areata is permanent medical hair loss which has devastating effects on young girls.

Why am I giving my hair to Pantene Beautiful Lenghts instead of Locks of Love?  Because I am actually going through this process myself and wish to help someone that is traveling along my path.  Someone that is not comfortable with the physical effects of cancer treatment.  I know that I can ease one person’s fears and concerns and I am up for that.

Cyclophosphamide-(Cytoxan trademarked name) is the second chemo drug in my cocktail.  This drug is delivered via IV drip.  I have to drink 64 ounces of water and/or decaffeinated beverages DAILY, with instructions to “Empty bladder frequently – Don’t hold it”.

30% of patients experience:

  • Low blood count – white and red cells
  • Increased risk for infection, anemia, and/or bleeding
  • Temporary hair loss 10 to 14 days into treatment
  • Nausea and vomiting, usually beginning six to 10 hours after therapy
  • Poor appetite
  • Discoloration of skin or nails.  Dark nail beds.  For some patients, nails will fall off on both hands and feet.
  • Diarrhea
  • Mouth sores
  • Bladder infection and bleeding.
  • Rinse mouth after each meal with 1 teaspoon of baking soda mixed with 8 ounces of warm water.
  • Use of an electric razor is recommended for any shaving – men or women

My Chemotherapy Nurse would be with me throughout the entire process.  This would take four hours from start to finish, not all of it constant supervision.

She came wheeling a cart of supplies to get this party started.

Cart of supplies

Cart of supplies

Now she is getting serious!!

Getting down to serious work

Getting down to serious work

When I saw my surgeon the day before, I asked him about the Lidocaine ointment I was supposed to put on the Port thing to ease any pain of the needle being inserted.  His response “Not necessary.  Children have a worse time of it and it is essential to be used then.  Adults don’t even notice it.”

Can you guess what my Chemo Nurse had to say about that when I walked in without my port covered in plastic wrap?  The Lidocaine ointment has to be administered 30 minutes prior to puncture.  The Port must be covered with plastic wrap during the 30 minutes time.

Even with her counting to THREE before pushing the needle in….YIKES it was uncomfortable!  Survived It!  YAY.

Port in use

Port in use

The first hour or more was spent having the standard drugs run through.  Saline drip, an anti-nausea drip, some kind of steroid for something else.  All while waiting for my TOXIC SOUP to arrive from the hospital pharmacy.

While I’m waiting and feel good I’m going to keep my hands busy.  I brought a small packet of pre-cut and pre-scored items to make my little 3 x 3 note card gift totes.  Joe took this photo to share with our kids.  Each person that comes to take care of me today will be given one of my “Thank You” totes.

Passing the time

Passing the time

Creating the little totes

Creating the little totes

Joe spent quite a bit of time enjoying the aquarium next to him watching a clown fish and a clam or oyster shell open and close.  Each time he got a bit closer to the glass the shell closed, he had to patiently wait for it to reopen.  Joe’s big question…”Where are they eyes of the clam?”  How did it know he was getting closer?  Love that man of mine! 😀

I love this man of mine!

I love this man of mine!

I asked my Chemo Nurse how long she had been doing this work and why she enjoyed working with cancer patients.  Her answer made me wonder at how life’s perspectives get tipped over one their head.

She has been a Chemo Nurse for 21 of her 25 years in nursing.  Coming to Chemo she found that the patient’s attitudes are so different from the general patient population.  “On a regular floor” she said “if a patient needs pain meds they push the call buttons and call out frequently.”  She continued “When we arrive at their room they demand pain meds immediately!”  Those memories are still quite troublesome to her and I could hear it in her voice and see it in her hands as she gave me the Doxorubicin.  I mean, I had her undivided attention for at least 30 minutes, I just had to be a Nosey Parker.  “The Chemo patients say”, my nurse continued, “When you get a chance I will need a bit of something for the pain.  No hurry.”

Someone in the hospital for a bad appendix, gall bladder, hip or knee replacement, or any other kind of surgical procedure is bound to have a lot of pain.  Is there a difference in attitude between general hospital population and the Chemotherapy population?  There are people in both arenas that are terrified of dying and of the “Big C”.

I’m wondering if the difference is the quantitative care one gets in Chemotherapy over a regular hospital floor.  The Chemotherapy floor is wide open and circling the Nurses Station.  Special reclining chairs with arm rests are everywhere.  IV poles and machines are next to each chair.  The Chemo patients see the bee hive of activity by the nurses as they move about tending to their jobs.  In a regular hospital room you don’t see the nurses until they come around for vital signs or to do a spot check.

The last drug I have is a timed one.  24 hours after my Chemo treatment this little device will inject Neulasta into my system to cause my bone marrow to create more white blood cells to fight this cancer and treatment.

Neulasta - at home in my pj's

Neulasta – at home in my pj’s

My Chemo Nurse said, about 15 minutes after she placed this busy little packet on my stomach, there will be a sound like a rubber band snapping and I will feel a pinch as a “Canella” will be inserted under the skin.  There is a flashing green light counting down the timer to injection.  Which will be at about 4:30 the next afternoon – October 13th.

Joe was getting ready to take a video of the thing shooting into me.  He was so excited to see me jump and yelp.  He wanted to have this documented forever, my startled exclamations and all.  Uhm…..he missed the whole show.  He DID MISS IT!  Sitting right there in front of me, cell phone camera pointed and ready.  I yelped and jumped and startled HIM!  He had not had the video button pushed at all.  ROTFLMAO!  😀

The most common side effects – 30% of patients.

  • Bone pain.
  • Pain in shoulder blades, sternum, long bones
  • Achy and sore feeling.  Kind of like the flu
  • Tenderness at the site of injection

For the remainder of the day I felt pretty great.  Sweaty at times but not bad.  This morning (10/13) I woke feeling energetic and ready for the day.  Joe fixed me breakfast.  Listen people this was his very FIRST attempt at making an omelet and I think he did FABULOUS!

Joe's omelet skills

Joe’s omelet skills

Making of the omelet

Making of the omelet

Okay, it is time for me to go do some things I need to take care of for this week.  While I feel like I am able to do things.  My energy level is depleting hourly now (October 13th) so I better get busy.

Leslie

I’ve had to be peeled off the ceiling. Freaking Out Here!

I was in my craft room preparing for my video this Friday.  Do you have the word dies?  They are all the rage right now.

Image result for word dies

123Stitch.com sells these dies.  I’ve seen several tutorials on YouTube using these dies on card fronts.

I don’t have any.  If I don’t have any, I am sure I am not the only one.

Anyway, back to the reason for this post.  I was working away with my letter templates when I got a phone call from the OU Hospital where I am getting my breast cancer treated.

I don’t have a precise schedule for the surgery to implant the “Port” this Friday that will be used to deliver the chemo drugs next week.  I had been called on Monday and told someone would call me on Thursday to schedule the surgery and let me know where to go to have it done.  Then the following Wednesday would be my first Chemo treatment.

Back on track Leslie!  So I am working away in my craft space when I get a call from the Scheduling Department at OU.  The woman whom I spoke with told me I needed to have a $2,000 deposit on the day of my surgery.

WHAT?!  I don’t have insurance.  We can’t afford insurance coverage for me.  We have never been able to afford the extra coverage.  Joe is on Social Security and Medicare so his medical issues are handled that way.

I was so stunned by the call that I didn’t know what I was going to do.  I guess I just won’t be going on Friday for the Port surgery and I won’t be going to the chemo treatment next week either.

I told the woman I did not have the requested money.  She told me to get hold of the financial people at the hospital to work out some kind of arrangement.

Honestly, my brain had shut down after being told I needed $2000 before I had the surgery.  I hung up the phone and FREAKED OUT!

Throughout this breast cancer journey I have been able to give this to God and trust the doctors and the process.  Today….well let’s just say that I had a “Moment”.  Boy did I ever!

What am I going to do?!  Where am I going to get the money?!  I have less than two days!!  This means I will not be getting the treatment!!

Lord, I keep telling you I am leaving this in your hands.  I keep saying that this is yours to deal with because I have no control over this right now.  Then something like this happens and I take the problem back from  your hands and try to deal with it myself.

I called Joe and told him what happened.  GREAT!  FABULOUS!  That was the CORRECT thing to do.  I’m all freaked out so the best course of action is to freak my husband out while he is dealing with problems in Sylmar, California and Phoenix, Arizona.  Yes.  Add to his growing worry and problems.

So, Leslie.  How did that work for you?  Heavy sarcasm.

Joe didn’t have an answer either.  I had accomplished one thing though.  Now BOTH Joe and I are freaking out and clinging to the ceiling!  Way to go girl!

Back in my craft room I went.  Working on a couple cards to demonstrate on Friday I had my odd chat with God.  I don’t know how a person is supposed to pray.  Properly pray.  I just blab.  Nothing flowery or special.  Frankly what flits around in my brain comes out of my mouth.

Lord, I know I am supposed to leave this to you.  You are working to get the proper people lined up to help me in my cancer treatment.  You have the financial things under control.  I don’t believe this way of thinking, and you know it.  You know that I do whatever I can to take on the problem and solve it as best as I can.  You know that I have a lottery ticket worth $3.  I can take that to the store and buy another ticket for the $80 Million drawing soon.  I also know that is not going to work.  Putting my faith and trust, ALL OF IT, out into the ozone is not how I deal with life.

Okay.  I’m putting this problem back in your hands.  I will come and take it back about 10 times today.  I am going to believe that this whole thing is under control and I have to trust the process.

As I worked on the cards trying to distract myself from this major problem I thought about calling the Financial Advisor I am dealing with at the Stephenson Cancer Center.  Call her and find out what my options are.

Over the following 30 minutes I had my answer.  To my financial problem and to my prayer.  I make sure I show up for the surgery on Friday when it is scheduled.  There are forms for me to fill out that can  help with the surgical costs.  I have 14 days from the day of the surgery to get an answer to my filing of the form.  If I am disqualified I will owe the $2000 then and can make payments.

In short.  I don’t need to have the $2000 the morning of my surgery.

Is this God working in my life?  Or is this standard procedure at hospitals?  I am going to say that the answer to this is BOTH God and the hospital are working in my life.  I have a large group of people that are getting me through this journey.  Some hold my hand.  Some talk me down from my lofty  heights.  All of them ease my fears and get me thinking straight again.

I believe that God whispers and it is up to me to listen.  Make the phone call and get things started.  Get my answers.  Just listen, and believe as much as I can.

I had to share this with you.  You may not believe in God.  That is of no concern to me.  I wanted to share my eventful morning and early afternoon.

Don’t FREAK OUT when you are met with a seemingly closed door.  Find out who has the key or where there is another door.  People work at hospitals every day of the week, month, and year.  They deal with all financial situations.  Insured and non-insured.  I was even told today that some insurance companies don’t cover the Port surgery because it is an “Out Patient” procedure.  Anyone can be met with this kind of a problem.  Make some phone calls and find out what your options are.

Leslie

My Chemotherapy begins today.

It has been quite an eventful three weeks since my last post.

Doctor appointments

Doctor appointments

I guess it has been well over a month now.  On July 22nd I had a PET Scan.  The findings from that was a dark spot on my left adrenal gland, my right Femur, and in my stomach.  The appointment with my surgeon on July 26th was to tell me of the PET Scan findings and subsequent tests that would be done to see if my breast cancer had spread to the darkened areas.

According to my surgeon, a dark spot on a Femur is an indicator of breast cancer.  If a spot is found near the hip, breast cancer is soon to follow.  In later days I would have a bone biopsy done.

August 3rd was the start of a pretty rough week.  I have been a one pack a day smoker for over 40 years.  I’ve tried to quit on numerous occasions, with not much luck.  I am under the supervision of an RN who specializes in Smoking Cessation.  Through her care I have been given a box of nicotine patches to help me quit smoking.  And a box of of nicotine gum.

The thing I have been able to keep uppermost in my mind is not the cancer or treatment, but the rich blessings I have received from hundreds of people around the world.  Each person let me know they were praying for me.  Through your prayers, encouragement, support, and the love you have freely given to me I feel POSITIVE that you all have had an enormous effect on my cancer.  This post is to inform you of what those prayers have caused and to tell you how grateful I am for each and every one of you.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Earlier in the month of July I had been informed my breast cancer is fed by hormones, Estrogen specifically.  Then I was informed by  a nurse to the Oncologist that nicotine feeds the breast cancer.  And to top it off, I was later informed that all foods I consume feed the cancer.  This is truly a case of “Damned if you do and damned if you don’t”.  No winners here.

Before I met with the Smoking Cessation Specialist I had worked pretty hard for a couple of weeks to cut down on my smoking.  I was able to get a pack of cigarettes to last for 48 hours.  After I was being treated with the nicotine patch I gradually worked myself down to two cigarettes per day.  Stressful days I would have three.

That first week of the patches, having to write down the time I lit up and for how long I smoked….a few puffs, half a cigarette, or an entire one was really quite challenging to my temperament.  I had to indicate if the desire to smoke was “Low”, “Moderate”, or “Strong”.  Also I had to make note of WHY I lit up.  No matter what the reason was that I put down on the little paper, the end result was just plain old REBELLION.

On August 8th I had to go for the bone biopsy.  I would be put into another scanning machine to locate the dark spot on my Femur then the doctor would drill for oil.  I had a peek at the tool he used, after the procedure was over, much to my dismay.  A specially created drill bit that would do a core sample as well laid on the instrument tray.  That bit was every bit of 5 inches long!

Bone biopsy drill

Bone biopsy drill

Scanner for my bone biopsy

Scanner for my bone biopsy

I was awake through this procedure.  The nurses who monitored me and assisted the doctor had me lie on my stomach.  Once prone, the nurses were not very happy with where I had placed myself on the bed.  Each of them grabbed a bit of the sheet at my feet and speedily hauled me backward.  That was shocking if I do say so.  I’ve watched too many movies and television shows.  The speed at which I was jerked backward was very unsettling.  They giggled, I loudly blurted “Holy Sh*t”, which caused more giggling.

The nurse that monitored my vital signs told me she would give me a drug that would cause me to forget what was happening and another drug that would be a pain medicine.  What was I supposed to forget?  The amount of discomfort this procedure was going to cause or if my potty mouth was no longer in check?

I can say the drugs I was given made the stabbing pains in my left breast go completely away.  That was a comfort all by itself.  I had to remain awake to move around as needed for the drilling.  I would hear the drill motor going then it would stop.  I would be told to tip over to my left side just a little bit.  Then the bed I lay on would be mechanically moved into the scanning machine.  At a sufficient position a whirring noise would sound, the doctor would say something, the whirring would stop and the bed would come back out of the machine.  I was then instructed to lay flat once more and the drill motor would begin again.

When the procedure was finished, then and only then, did the doctor tell me to be careful for the next 72 hours.  No heavy lifting, no household chores, no strenuous exercise of any kind.  I could possibly break my femur and that would entail major surgery.  Thank  you Doc.  You could have warned me when I was a bit more lucid in my head instead of at the end of the procedure when I would be allowed to go to sleep.  I thought of breaking my leg for more than 72 hours.

I was in no pain at all by the time Joe came to take me home.  He had been told I would be held over for four hours and he was told to go get something to eat.  While he was gone they reduced the time to two hours, of which mere minutes of that time remained.  Poor Joe nearly broke a leg hurrying to my little part of the hospital to take me home.

Oh, Lord have Mercy!  That night.  The pain in my right leg was tremendous.  It was such that made my entire body shake from the intensity.  I had not been prescribed pain medicine.  Do you know what I did at 1:00 a.m. when the pain was too much?  Well I’ll tell you what I did.  I dug through my bathroom drawers and cupboards until I found a bottle of Hydrocodone which expired June of 2006.  I took one of those pills and waited for it to take effect.  By 3:00 a.m. I was blissfully asleep.

My cigarette smoking has stayed in the two per day for a few more days.  By the end of the week I had managed to get it down to one and a half.

On August 10th I saw my Oncologist.  She got a good hold of my left breast.  Raised it, lowered it, moved it the right and left.  She was not very delicate with her maneuvering either.  She squeezed it.  Put a micrometer tool under my breast, flopped it around while she adjusted her measuring device.  Jammed the toothy tool into the under part of my poor breast to get her measurements.  That was uncomfortable but worse was yet to come.  She began firmly feeling for the edges of my cancer.  Pressing deeply with her finger tips then squeezing firmly with both hands to find all the various separations, of which there are several.

When she was finished my lower jaw ached.

I was under a NO ASPIRIN restriction so I had to ease the discomfort with wimpy Tylenol.  I couldn’t use my Vanquish which I rely on.  I would have my stomach scoped the next day and would have a biopsy done which required the No aspirin restriction.

After visiting with  my Oncologist I went to see the Smoking Cessation Specialist.  I told her of my progress, which she was pleased.  I was a bit bummed because my smoking had increased to three the day before.  She performed some kind of lung test.  I would inhale a deep breath before blowing into a machine that would indicate how much of a smoker I am.  On my initial visit with this Specialist this test had a result of “16”.  She said that did indicate a 1/2 pack a day smoker.  On this day when I took the breath test it was on “5”.  She was really happy and told me that I was now considered a Non-Smoker.  So that made me feel better.

The cravings can be quite strong from time to time and hard to ignore.  I do make many attempts to distract myself during those powerful urges.  Sometimes I’m successful and other times I am not.  I have come to find that during stress is when I smoke more.

On August 11th I had my stomach scope done.  This time I would be put completely out with the aid of drugs.  Of course, while all the prep work was being done in getting the equipment ready for the doctor one of the nurses asked me if I had any questions or concerns.  Of course I did.  Not with the procedure as they were expecting me to pose my queries.

“How clean in that thing you will be putting down my throat?  I mean, am I going to end up with some terrible infection that is left over from a really sick person before me?”  I was serious.  I’ve read the articles on the internet and you know….if it is on the internet then it HAS to be true!

Both of the nurses began telling me how clean they keep their equipment.  I was told how they get inside to the different levels and thoroughly clean them.  They went on further to state that they have been where I was and their main objective was to make sure the equipment was clean enough for them to be tested and not get infected.

Hey, I was in the room and time was short before the festivities began.  A bit late now to be bailing out.  Besides, I was already hooked up to some pretty good drugs that were taking the edge off of my anxiety.

The nurse that would be in control of my drugs was the one who was working to ease my anxiety.  I remember her saying they were about to begin and that I would be going to sleep now.  Indeed I did go to sleep.  I felt them put some kind of weird thing in my mouth and put the elastic around my  head.  With my tongue I felt a round hole in the center of this thing set between my teeth. That was where the probe was going to be fed.  That is all I remember….UNTIL

I was partially awake and had an intense desire to swallow.  I could feel the probe far down my throat.  I tried hard to swallow, which was very difficult.  I lay there wondering how I could breath.  I concentrated on inhaling through my nose to see if I could, in fact, breathe.  I wondered at that hard tube being somewhere down my esophagus and tried to see if I could feel just how far down it was.  Then I felt the probe being pushed further down my throat and I heard myself groan.  Yep, the drugs were then pumped into me right then and there.

I don’t remember being moved from the room I had started in to awaken in the Recovery Room.  I thought the nurse was lying to me.  I was so disoriented and groggy that I have no idea if I said anything I would have been ashamed of were I not drugged up.  If I did the nurse was kind enough to let it go.  She stayed with me until I was able to stand and walk into the waiting area where Joe was.

Once home I went to my living room chair for a moment to quell the dizziness I felt and three hours later I made it out of the chair.  I had gone completely to sleep.

Friday, August 12th I had my normal stabbing pains in my left breast.  Sometimes it was really intense on the underside and almost unbearable.  I could rely on my Vanquish now that I was not having any further biopsies and could leave the Tylenol alone.

I had been spending quite a lot of time on my business paperwork the week before and on the days I didn’t have doctor appointments or biopsies.  I was making quite a bit of progress in getting that dreaded chore done.  Some days I would get into my third cigarette by nightfall.

I worked each day diligently.  Three hours or more to get that job done.  I had the various files sorted and in some stage of completion.

Data entry

Data entry

Completed files

Completed files

Personal files

Personal files

Now I had it to the point where I could get the finished files into one box.  I still have one month to go for the personal bookkeeping and a small bit for the business.

Completed files, bank statements, and personal files

Completed files, bank statements, and personal files

My breast was giving me some fits for quite a few days.  I had been scheduled for an Ultrasound on my breast for August 16th.  The stabbing pain was quelled with my Vanquish, which has 227 milligrams of aspirin in it, over the weekend and on Monday.  Tuesday the pain was pretty intense and constant.  I went back to my 10 year old Hydrocodone stash and took another one to ease my discomfort.

The morning of the 16th I’m told I will have a biopsy done on my breast to get me started on treatment.  The bone scan came back negative for any cancer cells.  The stomach scope came back with an ulcer and I had some bacterial pockets in my stomach that would need treatment with antibiotics.  I have H. Pylori.  A bacteria commonly found in people that eat Sushi or undercooked food.  I don’t eat fish raw or cooked so I have no idea how I ended up with that bacterial infection.

Anyway, since I had been taking Aspirin then the biopsy and ultrasound would be postponed until Friday, August 19th.  That was today.  The doctor who would be performing the biopsy was kind enough to prescribe me a pain medicine that was current and I would not have to rely on my outdated supply any longer.  So I used that medicine instead of my Vanquish.

This is my left breast.  It is swollen with the cancer and is mottled purple underneath.  This is when it gets to be quite painful, even to the touch of my clothing brushing against it.  The sheet in bed can be very uncomfortable.

My left breast

My left breast

I decided to take this photo.  Today I begin the treatment phase and it is hoped that this will work.  Reduce the cancer tumor, make it less hard, shrink it enough that surgery can be performed to remove it.  I’m hoping that it will and I won’t have to go through Chemo.

Because the cancer has not spread to other parts of my body and remains localized in my breast I can begin the Research Study which will be for six months.  Every month I will have a biopsy done on the cancer to see what the “Ki67” score is.  That is the growth of the cancer.  If it continues to grow and the Ki67 score gets higher this Research Study treatment will end and I will have to begin Chemotherapy.  If the current treatment on the Research Study is working as intended, at the end of the six month period the surgery will be performed to remove the cancer in the breast and the lymph node(s).

During my treatment it is expected that I will have “Hot Flashes”, which I have deemed Power Surges.  Some flu like symptoms, fatigue, bone pain, headaches, and other nuisance symptoms that can be dealt with by generally ignoring them and just suck it up.

There have been reports of abnormal liver functions in the blood tests with Fluvestrant, the drug I am being treated with.  Cancer treatment has come a long, long way since the first diagnosis and treatment.  There are different types of breast cancer and each type is treated in a different way.  Today there are pills and shots for cancer treatment.  My study is to find out if Fluvestrant can be used alone as treatment for hormone related cancers, before surgery.

Currently, I am working on a financial report regarding the GoFundMe account my daughter set up for me.  I thought, those of you that have been so generous, you would like to know how the money has been spent.  I assure you, I have not trotted myself to the local craft/hobby store to find the most shiny and beautiful papers and embellishments.

Thank you everyone for your prayers, encouragement, financial support, and love you have so freely given to me.  I am so very grateful for the abundance I have been given.  Thank you is just such a small thing but it is all I have to give.

Leslie

My cancer treatment planner

My cancer treatment planner

My cancer treatment planner

I spent a number of hours online searching for a medical planner and could find NOTHING!  There was not a breast cancer, cancer, medical, or any other kind of planner that would be used for a long term illness record keeping journal.

If I were to mass produce this and offer it to the general public there are many things I would do differently.  This is a “Prototype” and I need to work out the kinks and bugs in it before I even consider putting this up for sale.

I am trying to find my way through the “Rich Mom University” course by Renae Christine.  I will have to do another post and title it “Be Careful What You Wish For”.  I’m not bashing Renae Christine’s course.  It is ONE AWESOME COURSE!!  It is a MUST  HAVE if  you are thinking about growing your Etsy store, an Online Store you already have, or if you are just thinking about selling handmade products anywhere.

My problem is….I have not yet been able to get fully into the course since my wonderful husband, Joe, purchased it for me way back in March when the Rich Mom University program was open for 10 days.  It won’t be open again until 2017.  Check out her Rich Mom Business FREE training to see a smidgen of what  she teachers in her RMU course.  You can get there at this link.  http://richmombusiness.com/about

My truck driving job kept me away from home.  I would listen to her coaching calls on my iPhone as I drove the highways.  Did you know there are cellular dead spots in a lot of places?  Well, there are.  Renae Christine would be answering a question from a fellow RMU participant and my phone would freeze.  This dear sweet woman, who has poured her heart and soul into creating a business plan…..a TITAN OF HANDMADE business plan, and her cute face would be frozen in the odd positions for many miles and several hours.

You know what I mean.  You have a television that you can pause the program you are watching.  The face of the person on television at the moment you paused it.  Open mouth, one closed eye, or some combination that makes you look twice at the screen and chuckle.  Poor Renae Christine spent many hours frozen in an odd position.

Then I have been waylaid by doctor visits and other things for my breast cancer.  I get distracted by the paperwork I have to do for our business.  I have way to many excuses for not getting in to the RMU course.

Okay, I tend to get off track.  So, the changes I would make to this planner would first be make it with a 3 ring binder.  Not everyone is like me and would not appreciate having the spiral binding which prohibits insertion of different things.  Or even relocating the guts of the planner into different positions.

I have put in a pocket at the front of the book, inside the front cover, to hold the stuff you get from the doctor’s office each visit.  I have used a 13″ x 13″ scrapbook pocket that I cut down to fit in my planner.  There is a place for the business cards I seem to be given at each appointment I’ve been at.

Pocket insert to hold business cards

Pocket insert to hold business cards

The next section of this scrapbook layout thing was intended for stickers or photos you wanted to put on the layout.  Now it will be used for any prescriptions or small pieces of paper I need to keep that I get from the doctor visits.

Short pocket for prescriptions or small papers

Short pocket for prescriptions or small papers

The other side of the scrapbook pocket thing has a place to hold papers or embellishments you want to use on your layout.  I’m going to use it for something, I’m not quite sure what but I’ll figure it out.

A pocket for other things I need to keep

A pocket for other things I need to keep

And the last pocket in this scrapbook thing is for the 12 x 12 paper and other things a person would need to create a layout.  I can put 8-1/2 x 11 paper in it.  Things I get from the doctor office or notes and questions I have for the doctor so I don’t misplace them.

A full pocket for 8-1/2 x 11 paper

A full pocket for 8-1/2 x 11 paper

The Tabs definitely need work.  I used the tabs from the American Cancer Society folders they so generously gave to me.  Plus I had to use the WeRMemory Keepers Envelope Punch Board to create tabs for the things not included in the ACS file folders.  Right now they are working for me.

Tabbed sections

Tabbed sections

I had to go through my bead assortment to put some kind of a stopper on the ends of the spiral binding.  To keep them from working out of the holes at the top and bottom.  I used E6000 to hold the beads on.  We’ll see how long it takes before they fall off :/

Stopper bead at top

Stopper bead at top

Stopper bead at bottom

Stopper bead at bottom

I spent a couple days talking to my computer, hollering at it really, trying to figure out how to make my planner pages.  I have a Mac and had to learn how to use the document handling program called Pages.  Let’s just say it got quite noisy and abusive here until I got it figured out.

Planner pages inside my journal

Planner pages inside my journal

My intention is to be an active participant in my cancer treatment and recovery.  All of these doctor offices I visit give me forms to fill out on my Medical History.  I can’t remember what I put on the last form when I am confronted with a new form.  I have created a form that will, hopefully help me keep my dates and information straight.

I want to track my progress at each visit.  Weight, temperature, blood pressure, pulse rates.  I generally don’t ask my Family Doctor for that info when I go visit him.  I will be keeping track of that this time.  I have created a form for that.

Medicines.  Good grief!  Every doctor visit I have been accompanying Joe to his various doctors, the nurse ALWAYS  asks about his medications.  Some people in the waiting room have ziplock bags with their bottles of medicines.  I have created a form for all the medications I will be taking or have put in me if I go through chemo.

Lab results.  Blood work tests.  I don’t even know what my Blood Type is.  Now I will know.  I will be able to keep track of these results each time the test is done and have a place to record them.

Appointments with the various doctors and technicians that I will need to see, or have already seen.  The dates and times of the appointments, which doctor or technician, which facility I have to visit.  This information will be transferred to my monthly calendar and my weekly calendar.

Dates of mammograms, biopsies, chemo, radiation, or hormone treatments.

I’ve tried to think of everything I would need to have in my treatment journal.  So we will see if this is an awesome tool or a total flop.

Oh, and in case you are wondering what the cover material of my book covers are.  Wallpaper.  I  have a big roll of the stuff I got from my local big box hardware store for about $10.  I think it is quite pretty 😀  It is very tactile.  Bumpy, smooth, visual texture, and so many things that keep this crazy woman that likes shiny things happy.

And, the plastic covers on the outside of my medical journal.  I have one on the front and one on the back.  I have cut down some plastic dividers intended to separate scrapbook paper in a holder.  Organized people like to keep their papers sorted by manufacturer and not by color.  These tabbed dividers work with sorting by color as well.  I have a ton of them in the dark recesses of a cupboard.  Now they will keep the rain, snow, sweat, and coffee spills from marring my beautiful covers.

Okay, that’s it for today.  I hope you all are enjoying  your summer weekend.  Those of you in other far flung areas across the globe that are in the midst of winter, I hope you are enjoying nice weather and not freezing  your hoo-hoo’s off.

Leslie

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