Radioactive Iodine and Whole Body Scan

After the 4 masses on my thyroid had been removed along with my entire thyroid, it was time for treatment, to kill any remaining thyroid tissue (because cancer can grow on this tissue) and to kill any distant site cancer that had possibly metastasized.

Radioactive Iodine (RAI) I-131, is unique in the fact that it is the only chemotherapy and radiation treatment that is given together in one oral  dosing.  It is also unique in that there are usually very few side effects compared to other forms of chemo.  No major hair loss, weight loss, energy/appetite loss.  There are possible side effects that can show up both immediately and some weeks later.  If the thyroid cancer was to return to distant sites and cannot be treated with RAI, is RAI resistant, or certain types of thyroid cancer-these do need treatment with more traditional chemotherapies.  

There are very strict rules when receiving RAI.  You must plan for it beforehand.  You will be in isolation for 10-14 days when you have your first RAI dose.  This treatment dose is always higher than subsequent diagnostic doses.

You need to have a bedroom and a bathroom that only you are going to be using.  You will be radioactive after receiving the RAI and MUST be in isolation.  You can affect other's thyroids, as the RAI binds to Iodine, which is otaken up by the thyroid.  Being exposed to you would be very harmful to their thyroids, and animals also.  You will most likely be following an Iodine-Free diet before the scan.  Since Iodine is taken up by the thyroid, you do not want to be eating food with iodine and adding to the levels of iodine before the RAI and whole body scan.  Personally, my doctor did not recommend the iodine-free diet to me. 

Staying in the hospital used to be done but insurance doesn't pay for that anymore, and the room must be covered in plastic, meals are left at the door, nurses do not enter the room.  Staying in a hotel is not recommended as you would expose the cleaning staff and the next guests to the RAI.  

You need to plan using either paper plates and plastic utensils , using a designated trash bag for just your trash.  This bag must sit away from other people and when finished, kept in the garage or a room away from others for two weeks before you throw it in the main trash to be disposed of by your city.  Trash trucks are scanned for radiation before they dump their load. They can actually trace where a bag of high radiation came from if needed. Letting your bag of trash sit for a couple weeks allows the radiation to dissapate.  We are responsible for other people's exposure to us, and our radioactive items.  You can also use one or two regular plates and regular utensils that you will be washing separately from anyone else in your home.  Buy some sour candies to suck on as RAI affects the salivary glands and sucking on something sour will keep you salivary glands working at their best.  

In the bathroom, flush the toilet twice after using.  Keep any tissues, etc in a separate trash bag.  If you do not have the ability to use a bathroom by yourself, make sure you keep it clean for the other(s) using it.  Water alone is more effective to rinse the sink and shower than using a cleanser each time.  Keep your towels in your room.  You may have to come up with new sleeping arrangements for this time, asking your mate to sleep on the couch so you can be in the bedroom with a closed door.  

Of course the perfect situation is living alone, but you will have to figure out what works best for your situation.

My experience taking RAI was- I started on Monday, going to the hospital for an injection of Thyrogen, which lowers your TSH.  Tuesday, I went back again for the second injection of Thyrogen.  Wednesday, I went to the Nuclear Medicine department and the tech got my pill from a steel case, then inside that was a very thick, egg-shaped steel holder.  She was covered in X-ray gear, with the addition of a high cover over her neck to protect her thyroid.  The doctor stood about 6 feet away.  She opened the steel egg and poured the capsule into my hand and I took it immediately.  The moment I swallowed it, I was radioactive.  The doctor stepped farther away as I was led out by the tech.  We walked quickly through the hospital. 

You have to arrange transportation directly home.  Driving yourself is best.  If you cannot do that, sit in the back seat on the opposite side of the driver.  Do not use public transportation. When I was taken outside the hospital to get my car, the tech stood with me far away from others.  I had valet parked and she told the valet to leave when he brought my car, and she made sure I was in the car safely.  

Isolation begins the moment you get home.  You will be in isolation for 10 to 14 days.  This time allows the Radioactive Iodine to kill any thyroid tissue that is cancerous.  This is a great time to catch up on your reading!!  I'm a big reader so that took up a lot of the time.  Get some light reading too, magazines are fun.  Having a TV in the room is essential--binge on your favorite show!  I wrote a lot too.  Talking on the phone is also a good way to feel connected while you're alone. Reach out to friends and family, who should know about your treatment so they can understand you may need more connection on the phone than usual during this time.  

Some patients can feel lonely during this couple weeks of isolation, but preparing with the above items will make you feel less alone.  The time goes by quickly after all.  

When the isolation time is up, you will be scheduled for your full body scan in the Nuclear Medicine department.  You are no longer radioactive and life can return to normal.  This scan is a simple test for the patient, you lie on a table on your back, the scanner moves very slowly over you, it's very close to you.  It takes about 1 1/2 to 2 hours. 

Your Radiologist will meet with you after the scan is read and go over the results.  Mine was clear, and the 2 diagnostic scans I've had in the past few years were clear also.  At this time, my Thyroglobulin is high again, it's watched for a slow rising pattern which could indicate the return of cancer.  Breaking my femur got in the way of having my diagnostic RAI and body scan, so I'm playing catch-up on that and a few other things.  

Gentle Hugs....and a tolerable pain day.

My Total Thyroidectomy for Thyroid Cancer

After seeing a Specialist about the masses on my thyroid that had been found on Ultrasound, he ordered a Fine Needle Aspiration or FNA.  This is a biopsy.  

I laid on a table and the doctor asked me to extend my neck.  He then injected a local anesthetic.  Under flouroscopy, he guided the needle into a nodule and aspirated cells from that nodule.  He repeated it again into another nodule.  It didn't hurt per se, it was uncomfortable.  This took about 60 minutes total. He did not aspirate from all 4 masses.

The Endocrinologist set an appointment for the results to be discussed.  He told me I had Hurthle Cells show in the biopsy, a rare type of thyroid cancer cells.  Next, we talked about my choices.  I could have a lobectomy, removal of one thyroid lobe. The other choice was a total thyroidectomy where the entire thyroid is removed.  With the partial removal, there was a chance I'd have to have the remaining lobe removed in the future, if another nodule was to grow there.  Because I had masses on both sides, it was recommended to have the total thyroidectomy. With that, I'd have to take thyroid replacement hormone for the rest of my life.  I'd do anything to avoid another surgery and told him let's do the total thyroidectomy. The surgery was scheduled quickly. 

I would stay one night in the hospital if everything went well.  The usual pre-surgery checklist was followed and the morning came for surgery. Spent some time in pre-op and went into the surgical suite, then I was out.  Apparently it went well and I woke up in my room.  The next day was my 55th birthday which matters to the thyroid cancer situation as the cutoff is 55 and above, and 55 and below for staging and survival rates.

My surgeon came in and told me that I had 4 masses on my thyroid and that one was very large, over 4cm, like walnut size and he had some difficulty getting it out.  He said that the pathology results would be sent to my Endocrinologist.  During surgery, the parathyroid glands were taken out and then  reimplanted after the thyroid was removed.  They are small glands, 4 of them, that lie within the thyroid gland.  Recovery took a couple weeks, the incision was healing well.  It is interesting to note that my thyroidectomy was the last one my surgeon would perform.  My endocrinologist said he stopped doing them due to the difficulty-- as all thyroid tissue possible needs to be removed, and the length of the surgery.  A thyroid cancer patients favorable outcome through the years rests on the initial surgeon skillfully removing all thyroid tissue.  

I went to see the Endocrinologist and he told me the pathology results showed that I had  Follicular Thyroid Cancer, Stage 2, with invasion of the vascular system. It was well-differentiated which is what you want to see.  These types are easier to treat.  Follicular thyroid cancer makes up 10-15% of all thyroid cancers.  There are roughly 4 types.  Papillary is the most common and makes up 85% of thyroid cancers. 

Next was the discussion about treatment with Radioactive Iodine (RAI) or I-131.  This is to kill any thyroid tissue/cancerous tissue remaining.  This is both chemotherapy and radiation together.  A full body scan is then done which shows any metastisis to distant sites.  

Next--Radioactive Iodine treatment and full body scan.

Gentle Hugs....and a tolerable pain day.

Asking For Help

Asking for help doesn't always mean you get what you think is right for you, but it sets the wheels in motion.

In 2013 my body and mind had reached a breaking point.  My chronic spine pain was not responding to the medications my doctor had me on.  I had moved, and was finally seeing a pain management physician, but the medications were not effective.  Combined with the other symptoms of anxiety, severe insomnia, rapid heart rate, brain fog and the fact I was in an abusive relationship, it was all too much to bear.

I needed help and got a referral to a place they assured me would help with the mental issues, and said they would also help with the insomnia and my pain. That was a tall order but I was desperate.   

I entered the facility with mixed emotions.  From the start I was unsure if I belonged there, many patients were there for substance abuse issues.  A couple patients were there for mental by disorders so I decided to stay and get some help.  Surely they would help me with my severe insomnia.

I didn't see a doctor right away and was given Vistaril for sleep.  Vistaril is an antihistamine and anti-emetic with properties that can make you drowsy.  I didn't need drowsy, I needed a hammer to knock me out!  I told them the drug name that I took at home and asked if they could increase it.  They were no help and I laid in bed at night just like at home, staring at the ceiling.  I thought, heck I could do this at home in my comfy bed!  

Meanwhile, my anxiety was through the roof, my heart felt like it was going to beat out of my chest.  I had major brain fog and sat through the group sessions not caring or really understanding what anyone was saying.

One day, I felt like I was going to blow up with all the symptoms reaching a breaking point.  I told the nurse I needed to go to the hospital, and when I got there, I saw an ER doctor that ordered a thyroid Ultrasound.  My confused mind didn't understand why, but I went along with it.  

Three days later she called me at home.  "Shauna, you have 4 masses on your thyroid, one quite large, I cannot rule out carcinoma at this time; you need to get to a specialist right away!"  She was my Angel in a lab coat. 

Next:  Thyroid biopsy and Total Thyroidectomy...                  

  

Gentle Hugs....and a tolerable pain day.

Searching For An Answer...is it Thyroid Cancer?

Getting my diagnosis of Thyroid Cancer took unneeded time, and valuable years of my life.  Looking back, there was evidence from a CT scan done in 2011 that certainly should have been utilized.  I was not diagnosed with Thyroid Cancer until 2014.   

That scan is referenced here, in a post titled: A Jawdropping CT Scan.   This was a thoracic spine study which incidentally showed a mass on my thyroid-- which was ignored by the ordering physician; ignored like many other issues he should have acted on.  I didn't know about the mass until I got a copy of the scan much later.  That doctor made some big mistakes in my care.  That scan should have had him immediately send me to two specialists: an Endocrinologist and a Pain Management doctor, as he was prescribing my medication, which was ineffective.  I was pleading with him to refer me to a pain doctor, as he knew I would not have anymore spine surgeries, and I was also very interested in the intrathecal pain pump.  That all starts with seeing a pain management physician.  His office was not known for timely referrals, or in my case, a referral at all.  

Those 3-4 years between a mass first seen on my thyroid, and getting a cancer diagnosis, were very tough times.  I had severe insomnia, unable to sleep for three months, after staring at the ceiling all night, sleeping on the couch because my boyfriend snored something horrible (and was abusive) I sometimes caught a quick nap as it neared early morning, then being awoken by his alarm, it was impossible to go back to sleep.  I was absolutely dragging through each day.  

I had a rapid heart rate which presented itself on my shirt-- moving with each beat, it was so strong.  That heart rate contributed to feeling extremely anxious during those 3 months of no sleep.  That kind of insomnia is akin to what is done during prisoner torture--keeping a person from sleeping for weeks, months at a time.  It makes you feel like you are going crazy; it causes psychosis.  

Brain fog followed right along.  Mix all of those symptoms up and I was a candidate for the psychiatric department like so many misdiagnosed thyroid patients.  Untreated thyroid disorders can mimic mental health symptoms.

I showed as 'euthyroid' in thyroid blood work, which is normal levels.  So anytime I was tested for thyroid disease, it was all normal, yet I had cancer growing in 2 of the 4 masses on my thyroid.  I came to learn that doctors can not rely on blood tests alone for finding disease in the thyroid.  I was a perfect example of that.  

I fought for my own health.  I took the initiative to press on about how I felt, my symptoms, the need to find out what was wrong with me.  Then my angel showed up.  God made sure I  wasn't alone in my fight, in finding out what was happening to me.

Next: Asking for help....An Angel showed up..

   

Gentle Hugs....and a tolerable pain day

My Intrathecal Pain Pump

This gave me my life back....

Also known as Intrathecal Drug Delivery Systems (IDDS) or Morphine Pumps, these implanted therapies provide round the clock, continuous infusion of medication directly to the intrathecal space, which surrounds the brain and spinal cord.  The medication goes straight to opiate receptors in the brain and dorsal horn of the spinal cord.  Oral, or systemic medications, have to be metabolized by the liver, go through the digestive process, and peaks and valleys of pain occur.  There is no constant pain control for the patient.  Oral medication is simply not effective for some patients.  My pump has been the best thing I've had done in the pain management world.  And I have tried many modalities to alleviate my constant pain.  Series of many epidurals, facet injections, botox injection, nerve ablation, spinal cord stimulator trial, two surgeries, one with a fusion.  I tried out anything that was safe and agreed upon with my physician.  I tried it all, and it all failed.  Then along came the IDDS, and after 30 years of severe pain, it has given me my life back.  Here is my experience with the intrathecal pump for chronic pain.       

THE TRIAL

In 2015 I had the trial for the implanted intrathecal pain pump.  This was done in the surgery suite of my pain doctor's practice.  He first injected a local anesthetic and under fluoroscopy, gave me a dose of morphine into the intrathecal space, which is the area that surrounds the brain and spinal cord.  I had to lay down afterwards for an hour to avoid a headache and to let the mediation absorb into the area.  That evening, and for the next 24 hours, it was the first time in 3 decades that I had NO pain in my thoracic spine, the area of most of my spinal pathologies and two past open back surgeries.  I was so excited knowing that we had found the perfect modality to alleviate my severe chronic pain.  At my follow up appointment, he submitted into my insurance for a permanent pump.  

PREPARING FOR THE SURGERY

Knowing what to do before surgery is very important, as it will have an effect on the lifetime of the pump.  If proper instructions are followed post surgery, the likelihood of a successful implant can be met.  There are very strict instructions--no bending, twisting, reaching, lifting more than 5 pounds, and these are followed for 3 months.  This will help the catheter to obtain and keep good placement, and for the pocket that holds the pump to allow scar tissue to form, keeping a good hold on the pump.  I put everything onto the counter in the kitchen so I would not bend or reach for dishes.  I got a grabber to pick anything off the floor.  I bought smaller items than usual in the refrigerator to avoid lifting more than 5 pounds.  Then the night before surgery, he prescribed Hibiclens to be used in the shower, using half the bottle, and the morning of the surgery, I used the remainder.  This is to help with a clean to sterile area of surgery.  Of course nothing to eat or drink 12 hours before surgery, only taking essential medications with a small sip of water the morning of surgery.  

THE PUMP SURGERY

My doctor came into the pre-op area and we discussed where the pump would be placed, he asked which side I usually slept on, planning placement for the opposite side.  Pumps are usually placed on one side of the lower abdomen, although it can also be placed above the buttock.  I asked him to place the catheter as high up the thoracic spine as possible, as my pain is thoracic in nature.  Then it was time for surgery.  He made a pocket in my lower right abdomen to hold the pump.  He then tunneled the catheter attached to the pump, from the front abdomen around the side, to the back of the spine.  Making an incision into the intrathecal space, the catheter was then advanced up the spine, to the level in the thoracic spine that would give the most pain relief.  He closed the pocket holding the pump with staples, and used surgical glue to close the inch-long incision in the back.  I had the expected post-surgical pain while in recovery, and felt pretty darn good when I left the hospital.  He originally put Prialt in the pump, a non-narcotic, sea snail venom that is one of two medications approved for use in the pump.  The other approved medication is Morphine.  I went home and was tired of course, and just went to bed and slept the rest of the day.  

POST-SURGICAL PUMP RECOVERY

The next morning I sat gingerly on the side of the bed and felt the oddest sensation having a foreign object in my abdomen.  When sitting or laying down, the pump hit my ribs and was very uncomfortable.  I could not sleep on the side the pump was on.  My abdomen was very swollen, as was to be expected, but I was surprised at just how much swelling there was.  I could not take a shower for 5 days.  The pocket incision was closed with staples, and over the incision was a yellow material that was the exact size of the incision, with a larger dressing over that.  I changed the larger dressing at prescribed intervals.  The incision over the one inch area he put the catheter was closed with surgical glue and would come off on it's own.  I observed all the restrictions, and was very careful with any movement as instructed.  

About a week after surgery, the abdominal swelling had decreased.  I went back at about 12 days to his office and the staples were removed.  Although still getting used to the feeling of the pump in my abdomen, the pain relief was amazing!  I was able to drive short distances with a towel folded over the pump pocket area at about 3 weeks post-op.  One month passed and the pain was managed well, with times that it returned and I had oral medications for that.  If there is a 50% reduction in pain levels, the pump surgery is considered successful.  Over the next month however, month 2, the pain started to return and I scheduled an appointment with my doctor.  He told me that Prialt is "either a homerun or it's not", and he switched out the Prialt for Morphine, which I have in my pump to this day.  The Morphine has been excellent pain relief for me.  He gave me a Patient Therapy Manager, or PTM to give myself preprogrammed bolus doses when needed.  This made a huge difference.  I got through the next month, and at month 3 post-op, my restrictions were lifted and I could move as desired.  Over time, the pump 'sank' into the pocket and it no longer was felt on my ribs.  It is amazing to me that I have a one inch thick, three inch across pump in my abdomen and I can sleep on that side without feeling it.  That took about 2 years to get to.   

             The communicator, PTM smartphone and the pump

REFILLING THE PUMP 

I go in for refills about every 2 1/2 months.  I have a Medtronic SynchroMed II Pump.  The size I have is a 20cc reservoir.  The old remaining Morphine is pulled out with a syringe, and new medication is pushed in.  There is a port on the face of the pump that is accessed to do refills.  It doesn't really hurt, as that area is numb and a good provider can stick the needle in without difficulty.  The pump is 'interrogated' at each refill, to get the information from the pump.  I hold a programmer over the pump which is read and gives the information to the main computer.  Changes are made if needed, done by inputting pump amounts and dosages.  The refill is done and I hold the programmer over the pump again which reads the new medication amounts and any changes.  The PTM I have reads the pump information when I need a bolus dose. It also tells me when the alarm date is, which is anticipated and an appointment for the next refill is made a good week before the alarm date.  There are two types of alarms, one for low reservoir, and one for battery life.  If managed correctly, I should never hear any alarms, and I have not after 9 years.  The battery life is 6-7 years and the pump needs to be replaced. 

REPLACING THE PUMP

In 2022 it was seven years I had had the pump, and it was time to replace it.  The catheter did not have to be replaced which makes a huge difference in post-op restrictions.  I have a newer type of catheter that allowed this.  For 2 weeks I was under minimal activity restriction.  For 4 weeks the instructions were no exercise, no bending, reaching or lifting above 5 pounds.  The original incision site is used to open the pocket to place the new pump, avoiding another scar.  The same surgery instructions applied, and Hibiclens is used in a shower the night before, and the morning of the surgery.  We did not need to discuss much in pre-op, my doctor came in and we chatted, we didn't need to pick placement this time around, it was already done for us!  It was an easy surgery, and post-op pain was greatly reduced this time around.  This pump is good for another 7 years, I will be due for another one in 2029.  

LIVING WITH A PUMP

I barely notice the pump anymore.  It has taken the bulk of my pain away, it has reduced it by 50%.  I have the PTM to give myself bolus doses.  I hold the communicator over the pump with the PTM smartphone reading the information.  When it is at 100%, I can just press the 'deliver bolus' and it is given.  It then locks me out until the next prescribed bolus is available.  At my last refill, he increased the bolus doses, adding one more per day and increasing the medication amount.  The pump medication, in my case Morphine, is 1/300 the amount of oral medication.  That is huge and is the beauty of the pump. My doctor says I am on a micro dose.  Although all pump medications are micro doses, mine is very low.  Looking at my PTM right now, the infusion is: Morphine Sulfate 0.3888 mg/day.  That's over 24 hours!  For comparison, long-acting oral Morphine is commonly given in dosages of 15mg, 30mg, 60mg and 90mg a day, up to 3 times a day.  Immediate release oral Morphine is commonly given in 5mg, 10mg, 15mg, 30mg, up to 4 times a day.  You can see there is a huge difference between oral dosages and intrathecal.  My bolus doses are: Morphine Sulfate 0.0400 mg, 2 boluses in 8 hours, max 3 boluses per day.  I usually use 1-2 a day if needed.  There are times of the day I know my pain will increase, and it can be situational, such as after being physically active, carrying things, extended standing.

 If you need an MRI, your doctor needs to know.  So does the MRI facility.  Your pump will stop running during the test, and should start again when it is done.  You need to go in to see your doctor after the MRI so they can make sure the pump is running again and everything looks good.    

The pump has been an absolute Godsend.  It has changed my life.  After living with severe chronic pain in my thoracic spine for decades, I can take a breath now.  I don't cry because of the pain.  Depression has absolutely dissipated, that was caused by living in pain every day, every moment.  That pain wears on you, it grinds you down.  Looking to the outside world like I was fine, made it even harder.  I tried so hard to live life like normal, but I just couldn't do it.  It changed me.  There were many days I didn't know if I could go on living in the amount of pain I was.  Imagine if you have had a surgery or a bad injury, and the pain doesn't go away when it is supposed to.  It's there every moment of your life, and you are expected to perform all the daily functions.  No one knows you are suffering.  Many chronic pain patients express a feeling of isolation.  Sometimes we are ridiculed for our use of doctor prescribed pain medications.  All we are doing is trying to live a life as pain-managed as possible, we know we will not be pain free.  Some pain patients take their own lives.  I have such damage to my spine from a severe rollover car accident and subsequent spine surgeries, I have been told for years that I will always have pain.  Pain I can deal with.  But pain that is incessant and constant despite the many modalities tried for pain relief, was something that was becoming an emergency.  But because I had had the pain for so long, it was never treated like an emergency.  Just because the word 'chronic' is before the word pain, does not mean it is any different than acute pain.  It is simply acute pain that lasts for days, weeks, months, years.  Now that I have experienced an acute femur fracture, I can liken my old spine pain to that, but it doesn't get better with surgery.  My doctor took one look at the fracture surgery X-ray and said, "You know that this is going to always hurt."  Oh well, it is a different kind of pain and one that I am okay with at least at this point.      

If you are considering an intrathecal pain pump, I encourage you to investigate into it.  Ask your doctor if they think you are a candidate for the pump.  If you are prescribed oral pain medications (no matter what class they are) and are not getting good relief, a pump may be your answer.  A trial can give you a good idea of how the permanent pump may work for you.  If you have any questions, leave a comment and I would be glad to discuss this with you.  You are worth a life of managed pain.                      

Gentle Hugs....and a tolerable pain day.

The 66 Mile Stalker

Stalking is a pattern of unwanted contact or behavior that leads someone to feel upset, anxious, or scared for his or her safety. (Psychology Today) 

Stalking is engaging in a course of conduct directed at a person that serves no legitimate purpose and seriously alarms, annoys, or intimidates that person. (Merriam Webster)

I wasn't sleeping well if at all in that period of my life, and was alerted to a text at 4:30 am while at my son's house. I was spending some time with him, and had left my place (not the first time) after being screamed at, raged at, humiliated, and I felt very frightened.  I felt frightened quite often in those days.  My instinct was to get away from the very danger that was residing with me.  I needed to be in a loving, calm environment, and try to make sense of what was happening to me. The fact I was not home, and was with my son, made someone very jealous and angry.  The fact that it was family didn't matter.  Narcissists/Abusers do not like the focus of their partner to be anywhere but on them.  After all, how can abusers do what they do best if their target isn't there?  I grabbed my phone and saw that the text said my son's parking gate remote was on his front porch.  I was instantly confused and when I saw who it was from I was even more so.  It was from my (then) boyfriend, who should be at our house well over an hour away.  I sat up and my heart began to race.  In autopilot, I texted him and said, "Are you here?"  I received no answer and I went to the front door and looked out the window, seeing no one I opened it up--sure enough I found my son's gate remote to his locked and gated parking area laying there on the welcome mat.  It took me a minute to realize that the remote should be in my car, which was parked in that gated area.  Why was it sitting out on the front porch?  And why had my boyfriend sent a text telling me exactly where it was, moved from inside my car?  I had thought a couple hours earlier that I had heard his loud truck out in the parking area but quickly pushed that thought out of my mind, for why on earth would he be here?  And at that time of the early morning? 

I started feeling afraid, scared.  Heart beating faster, I woke up my son and told him of the text and finding his gate remote on the front porch.  He and I walked out back to the parking area to my car.  As soon as we got close, I could see that something was wrong.  I used my key fob and unlocked the doors.  When I opened the drivers door, a bunch of stuff fell out.  What was going on?? 

Apparently, my boyfriend had taken a bunch of my belongings from our house, packed them into his truck, taken my other key fob that was in my jewelry box next to the bed, driven 66 miles to my son's house, climbed the fence to get into the parking area (which was tall and had barbed wire on the top) accessed my locked car with my spare key, let himself out of the parking area in my car to wherever his truck was parked, then transferred all the items he'd packed from his truck into my car, drove my car back into the parking area using the gate remote, parked my car, again let himself out of the parking area using the gate remote from my car, walked to my son's front door, laid the remote on the doormat and texted me that the remote was on his welcome mat.  

Now if that doesn't make your head spin.... 

On top of the craziness of all that, the items he had chosen to pack my car with were so random, things I absolutely didn't need--I certainly had not asked for any of them--but things like heavy nursing textbooks, lamps, bathroom rugs, and more boxes of books.  On the very top of the pile on my driver's seat was the toilet scrub brush--can you say Passive-Aggressive?  Or was this crazy act simply pure aggression? 

While my son and I stood in shock staring at all of this, I found myself feeling scared and very nervous.  I didn't know if my boyfriend was somewhere watching me.  I looked around the best I could to see if I could see him or his truck, and told my son I wanted to go inside, that I was afraid.  Of course my son was upset also seeing all this and gave me a big hug, telling me it would be okay, that I was safe there with him.  I still felt as if we were being watched.  

My boyfriend knew that I was physically unable to move all of these heavy items out of my car and my son had to do it, moving it all into his living room.  The front seats, back seats and trunk were all packed full. I had to use my car that morning and needed it to be cleared out.  The ridiculous actions he had taken only served to confuse me.  I was living in a constant state of confusion, trying to make sense of things such as this, while being abused verbally and psychologically.  (The physical abuse was yet to come.)  The fact that he had stalked me, taken the time and physical exertion to move my belongings into his car, driven 66 miles up to where I was, climbed the fence, unloaded them all into my car and leave a text for me in the wee hours of the morning was very frightening and disruptive.  If he had intended for me to feel this way, he had succeeded.  The thing that kept going through my mind was that he had over an hour of driving to cool off, to change his mind.  To choose to not go through with such an outlandish thing.  But 66 miles did not deter him.

Who does things like this?  What is the point, the end game?  Was he saying that because I was not at home with him, that I might as well have some heavy nursing textbooks to peruse?  Maybe I needed a toilet brush?  To this day, I can say that his actions that early morning, were the strangest, oddest events that I have ever experienced.  As I looked in the boxes, I saw what he had attempted to do. The books were arranged —he took time and he thought it out.  This whole extravaganza took him hours.  On the top were any books I had that were psychology related topics.  A book about women’s hormones. One about a woman and her fight with bipolar illness. (By Dr. Kay Redfield Jamison—a brilliant woman.) He took a LOT of time picking these out to place on top so they’d be the first thing I saw.  My psychology textbooks from nursing school laid on top, next to a book about Chronic Pain and Depression.  It was as if he was there, yelling “Look at all these, you are crazy” his one of two favorite words to yell at me during his rages, and “You are bipolar” (the other favorite) yelled very loud for humiliation purposes.

I will write more about living with a narcissist/abuser, there are red flags that if identified, and caught in time, could absolutely help someone in the early stages of a relationship with these people, possibly saving them months, years of suffering.  Reliving that early morning by writing here, has awoken a state of anxiety that I experience when I spend more than just a little time on those days.  It's not good for me, and I worked through these things years ago.  I am safe and I have healed.  If I tell someone about this event, they just stare at me, asking, why?  They can't wrap their head around it.  And I have no answer.  A dictionary can define a stalker, but it’s very hard to understand someone who does that.  I will never have an answer why he did it—he would not talk about this, as with many other things.  He would get angry and defensive, then proceed into either the silent treatment, a rush of verbal rage, a healthy door slam, or another personal fave of his, leave in his loud truck with a nice tire squeal for added impact.  As hard as I try, I will never understand the 66 mile stalker.      

Gentle Hugs....and a tolerable pain day.

ORIF Surgery/ Open Reduction with Internal Fixation

Sometimes, you just need a new part....

Because I have the Intrathecal pump for spinal pain, my orthopedic surgeon was concerned about my post-op pain. I am opiate tolerant due to the morphine in the pump, and there is only so much oral opiate pain medication he can give me— to be effective, the dosages would be too high. Ergo the On-Q pump would be used, running a non-opiate local anesthetic directly into the surgical/fracture site for three days. He would place the catheter of the pump towards the end of surgery.

The orthopedic surgeon’s planned second method of post-op pain control for me, was a nerve block. These two methods needed should give an awareness of just how much post-op pain was expected. The nerve block would be done also during surgery towards the end.

When it came time to go in for surgery, everything happened so fast! The surgeon does his cases in my area on one day of the week and he is very busy. Word came down from the OR that I was up next, and I was quickly taken into the pre-op surgery area. Then it calmed down once I was there and I met with the Nurse Anesthetist. Then another sudden flurry of movement and my surgeon came in, checking on me and rustling through the paperwork. He disappeared and my Anesthetist wheeled me into the cold operating suite. I was not looking forward to transferring onto the operating table. I still had the full leg immobilizer on and there was talk about taking it off. The anesthetist’s voice from above my head said no, not to take off the immobilizer yet, that he was going to put me to sleep right where I was, then they could remove the immobilizer and position me for the surgery.

The next thing I remember was waking up with my eyes closed, I couldn’t open them even a tiny bit. And wham the pain hit me. Someone was doing things to my leg and even though I was very, very groggy, I asked if they were doing the nerve block. Someone said yes and I was moaning, each time something was moved in my leg and a wave of intense pain rushed through. A kind female voice said that it was almost over, and she was holding my hand. Nerve pain is unique—it reminded me of having a nerve ablation and having to be awake enough to give feedback for the placement. I remember this happening about 5 times, each time the nerve pain flooded through and I cried out, there was a few seconds of respite before something was moved in my leg and I’d cry out again. Then I was out.

When I woke up in my room, I had an instant sensation of my leg being tightly wrapped, I could immediately feel that my femur was not split in two pieces anymore. I cannot express the absolute difference from 8 days with an acute fracture, to this post-op feeling. I felt whole again. I knew that my surgeon had done a LOT of repair work on and inside my femur. The pain did not overtake the joy I felt—he had fixed my very badly broken leg. The ER doctor had said that femur fractures are 'No Joke', and he wasn’t kidding.  Distal femurs are one of the most painful fractures, and I had experienced mine for 8 long days.  I was more than happy to have my new leg!  

My surgeon had first reduced the fracture, meaning the pieces that were split apart had been realigned and clamped back together. This is the Open Reduction part of the ORIF surgery. He then used 3 very long screws directly into the femur in the distal portion to hold the reduction, followed by a plate which lined up along the bone, with 4 more screws put into the holes in the plate. This was the Internal Fixation portion of the ORIF surgery. It was a long operation with multiple layers, fixing the bone then focusing on the post-op pain.

Back in my room, I looked down to see what state my leg was in. A bandage was tightly wrapped from my ankle to the top of my thigh. At the top, a catheter came out and was attached to the tennis ball shaped On-Q pump, which was held in a black bag. There was also a very thin black wire coming out the top of the bandage and was taped to my leg. This was the nerve block wire.  A lot going on!

I slept of course, exhausted from the surgery, and felt so blessed that my surgeon was both knowledgeable and compassionate, doing everything he could to relieve the worst of the post surgical pain, and tailor that to my exact situation.  This fracture has a healing time of one YEAR.  I had just begun.  

I have a new leg, held together by a plate and seven screws. I stayed in the hospital for three more days, for a total of 12 days. When my physical therapist came in the day after surgery to have me ‘walk’ in my room, the sensation was night and day from before surgery to after. It was actually tolerable pain, and I was able to get farther on the first day after surgery, than I had with the acute fracture. It felt so stable! It felt protected. The full leg immobilizer was back on again over the tightly wrapped bandage. Now this I could deal with! Oh, I had pain, no doubt about that, but it was a different type of pain. I could tell that the nerve block was very effective, as was the On-Q pump.

The day after surgery, the discharge nurse came in and we started discussing what was going to happen next. She would be finding and arranging my care at a Skilled Nursing Facility that had a robust physical therapy program. One place in particular sounded amazing and I prayed about going there. As it turned out, she got me into that care center, and three days after surgery I was heading to my new ‘home’ for the next two months.

Then the real hard work began.

Gentle Hugs....and a tolerable pain day.