My Unexpected Journey - The Beginning

My journey actually started on February 17, 2014 but I was misdiagnosed.  I originally journaled on Caring Bridge but as my story changed, I moved over to blogger.  This is what was on Caring Bridge from February 20th until May 2014.

On April 18, 2014, after 2 months of intensive IV therapy for a lung abscess, I was diagnosed with Stage II Lung Cancer. It was a moment in my life I will never forget, like a large boulder had been lodged in the pit of my stomach, and it has stayed there.  It is the moment when you realize there is nothing you can do or say or think to make it all better.  All I can do is fight the fight and share my journey, thoughts and feelings. 

I can feel the love...

Thank you to everyone for your messages on my first post, private emails, facebook messages and phone calls.  The love and support I feel is uplifting.  These past few days have been somewhat of a blur but my initial goal was to make it to Cameron's birthday party and have him see his Nanna just like he always does.  And I did it!  There were times throughout the day that were harder than others, so I just stepped outside for a few moments to gather myself and was fine.

I did come to one realization and it is a bit "freaky."  As you already know, my first thought when I got this news and was told to go to the hospital was, "No, I have to be at Cameron's Party Saturday."  Well, last night, Cocko and I were going through some very old photos and I found something that convinced me my mommie and my grandson will be the strength and guiding force to do what I need to do and conquer this.

Here goes:
  • I received my news on 2/20/14
  • Cameron's Birthday is 2/14/07 
  • I found my mommie's hospital bracelet from her initial hospitalization when she was diagnosed with cancer - February
  • My date 2/20/14 - add 2 plus 2 (from month and day) equals 4 - my mommie's birthday is 4/14
  • Cameron's Birthday - I found out in February 2014  - 2/14 
  • Cameron was born in 07 - I have 7 beautiful children
Call me nuts but this gives me the chills when I think about it.  My mother is my Angel that will protect me and Cameron is my strength that will force me to do what I need to do without reservation.

You can be a victim of cancer, or a survivor of cancer. It's a mindset.  Courage is looking fear right in the eye and saying, “Get the hell out of my way, I’ve got things to do.” 

Settling in

It has been a lonnnng day and not much got accomplished. I arrived at the hospital at 1:00 p.m Monday. The original plan was that I would go to admitting and be a direct admit, but at some point, it was changed to, "go to the ER and you will be a direct admit from there." Well, there is no such thing as a direct admit from an ER. The good thing was the ER doctor knew I was coming and knew I was being admitted.

So far the day progressed like this:

* Immediately upon arriving they started and IV and took TONS OF BLOOD - Like 10 tubes. The IV was started so they could give me 2 different types of antibiotics. After spending about 3  hours in the ER, I was finally moved to a room.
Once in my room things moved quickly in terms of meds, etc.  I was immediately hooked up to a heart monitor that slips in my pocket, more blood taken, more antibiotic IV's. The reason for the antibiotics is that my white blood count is very high  - but again, no symptoms other than a fever.

Overnight was uneventful and now... It's 6am Tuesday and I really have no idea what today has planned for me.  Nothing has been scheduled in terms of testing or the biopsy.  They are just checking me out completely to be prepared for whatever treatment may be in store.

The wait begins...

First, I apologize if any thing I type is a duplicate from a last entry but that being said, I think now I wait. Yesterday and this morning were filled with blood tests and blood cultures to determine where the "infection" is that is causing my fever to spike.

Today, at 10:00 a.m., I was taken downstairs to the Endoscopy where they did a Bronchoscopy. I was put into a twilight sleep and they inserted a tube down into my lungs and did several things. Looked around and took out several pieces of tissue for tests. They are doing 3 different tests

1. Pathology looking for malignancy - this should be back tomorrow or the next day
2. Cultures for infection
3. Biopsy for any other type of lung disease

Then when I go to back to my room they immediately came in and did an echocardiogram - and ultrasound of my heart.

So basically nothing yet. The only news I have is that my White Blood Count is still high but did come down a bit since starting the IV antibiotic.

More Waiting...

I may know what questions to ask sometimes, but waiting for the response, can really get on my nerves.  As of today, the facts are as follows:

  • CT scan shows cancer in large mass at bottom of left lung
  • Upon admission Monday, White Blood Count was 15,000 (normal is 4-10,000)
  • Started on IV antibiotics - 2 different ones alternating 
  • Tuesday, White Blood Count was 13,500
  • Tuesday, Bronchoscopy to get biopsy
  • Wednesday, White Blood Count was 13,500 - apparently no progress since yesterday - considering changing antibiotics
  • Bronchoscopy biopsy was inconclusive - Lung Doctor stated it technically came back negative but because the large mass is located so low they don't think they got a good sample (meaning down far enough) - they are scheduling a XRay Needle biopsy for the morning.
I asked the Doc if it is normal to receive a diagnosis from the cat scan, then negative on Bronchoscopy, then to find it positive on needle biopsy and he confirmed, absolutely.  My understanding is the doctors are 90% sure from the cat scan that it is malignant but now must continue to do biopsies to confirm.  They explained the lungs are one of the hardest to get biopsies from.

The lungs may be the hardest to get a good sample from, but this waiting for a confirmation and "official" diagnosis is getting on my last nerve.  I still have the fevers and am very tired - probably from the amount of blood they keep taking from me and stress. They did blood and lung cultures looking for "infection" but they are very confident the mass is not an infection.

I am keeping myself occupied with crocheting and my Kindle to read. And I LOVE getting all your messages - I truly see everyone's comments and messages but am so overwhelmed by all the love I can't respond back to each of you - but I WILL :)

Day 4

And here I sit with another 3 days of waiting.  As I said yesterday, the Bronchoscopy was inconclusive so today was a CT guided Needle Biopsy.  The Radiologist actually did the test.  They put you in the CT scan (on my belly) and take some films to find the exact location of the mass.  Then they marked my back and then inserted the needle to get the biopsy.  According to the Radiologist, the largest mass is still the same size but it appeared to have fluid inside it today.  Upon inserting the needle, they removed pus.  Then they took chunks of the solid portion of the mass.  The entire process took less than one hour but now I have to wait 3 days for the results.

My White Blood Count is still the same, no progress there. Every 8 hours I receive and 4 hour IV antibiotic so my day is basically spent 4 hours hooked to IV, 4 hours off.  Both of my doctors came in after the test and both said the same thing - it is a hopeful sign that the mass contained pus and there are two possible outcomes:

  • The mass is malignant but also contains a bizarre infection
  • The mass is an abscess - which has it's own challenges and long-term treatments
You always hear people say the first thing they think is, "how could this happen to me?"  I always have said that as a Shahinian, I never questioned if I would get cancer, but when? This past week has put so much in perspective - first to be told 90% chance you have it in all lobes, then to be told "we don't know" and now it's a 50/50 chance.  I have not asked what the future holds if it is a pulmonary abscess since there are 4 masses - some things can just wait. I think I'm on overload.


By  — Feb 28, 2014 4:28pm

I can barely say the words because it is a miracle.  As the doctor told my sister and I last week, they were 90% sure my largest mass was cancer - they had no questions in their minds.  Well, today, after 2 biopsies, they say the mass is NOT CANCEROUS.  AMEN!!!  The doctors say there was less than a 1% chance that it wasn't cancer and I made it.  It is some type of rare infection.

Now, do we know what it is... no!  So while I am back at square one the relief, love and prayers I felt this week were amazing and worked.  I will never be able to express how much everyone's comments and phone calls helped me through possibly the toughest week of my life.

I know this struggle is not even close to being over but HOPE is back.  Now we have to determine what the mass is, why they are infected, how to treat them and how to get rid of them.  Starting today, my treatment plan has changed.  I now will have 3 IV antibiotics alternating throughout the day/night, breathing treatments, and a consultation with an Infectious Disease doctor to help determine if the mass/infections need to be removed surgically.

I will say it everyday - THANK YOU for all your prayers - given that 1% chance they gave me of not having cancer, I'd say all your prayers worked <3

Still In Shock But New Game Plan

By  — Feb 28, 2014 8:48pm

Today was such a whirlwind of emotions.  I'm still in shock over what the Doctor told me this afternoon.  Among this fantastic news, I didn't get a chance to write about what happened in the last 24 hours.

Last night (Thursday) went the same as each night this week - IV's on and off all evening with antibiotics, medications by mouth, checking my temperature every 2 hours.  Around 1:00 a.m. the calm evening changed.  The nurse came into to check my vitals and my blood pressure was 98/68 - not horribly low, but low enough for them to come back every hour the rest of the night - there went any chance for sleep.

Well, at 5:00 a.m. when checking my vitals, my blood pressure was 72/47.  The nurses got extremely nervous and no matter how much I told them I felt fine they still called my doctor.  They gave me a bag of fluids via IV.  By 9:00 a.m. it was back up to around 90/60 so they weren't as worried.

All I could think about was "what the hell is going on with me?"  Honestly, I wasn't as worried about the "bad" things happening but was worried as to why all these bad things are happening and I don't feel sick!!  Well, they kept checking on me all day every hour to the point it was driving me crazy.  That was when the Doctor came in with the GREAT news.

Now everything has changed in terms of my hospitalization.

  • We have to wait for the results for the biopsy cultures to determine what bacteria we are dealing with - this could take until Monday. 
  • I now have 3 different antibiotics that I receive via IV and they alternate but I am basically hooked up to IV for 4 hours - then off for 4 hours - round the clock.
  • Two new medications - Mucinex and a cough medicine - now that we know it is an infection they want to get it out and are using the Mucinex as a precautionary measure in case the mass "leaks."
  • Albuterol Breathing Treatments - again, precautionary in case the liquid inside the mass leaks in my lungs
The way they explained it to me is, at this point there is a large mass in my left lung and 3 small on the right side.  They are all the same.  From the view of a CT scan, they all appear solid and malignant (cancerous).  But upon needle biopsy is when it was determined they contain pus.  Typically, a lung abscess mass destroys the lung tissue in which it is located.  That is now the major concern which leads to several questions:

  • What is the bacteria and what antibiotic will work best? (this will be answered by Monday when the cultures are complete
  • How to eliminate the masses? Will antibiotics work? Do they need to be drained via needle or do they need to be surgically removed?  (not sure when we will have the answer to this)
  • How long will I be on IV antibiotics?  Case studies in the past with this rare type of infection have had patients on IV antibiotics for quite a lengthy time.
So while I am jumping up and down, screaming and smiling at the wonderful news, there is still a long way to go.  Whether it was cancer or this infection, I still keep asking myself, "how the heck can someone be so sick and not have symptoms?"  Yes, I had the fevers and Yes, I know I should have gone to the Doctor sooner but the fact was I never felt sick except in the middle of the night when the fevers would be high.  So I would tell myself at 3:00 a;.m. I was calling the doctor the next day, but by the next day, I felt absolutely fine and would go about my day.  Well, the one lesson I already learned, and I told my doctor today - "Next time I get a fever, I'm not even calling your office, I'm showing up at the front door before I even take the Tylenol." :) :)

Family, friends and all those who are holding me in your prayers - listen to me - LISTEN TO YOUR BODY!! Let me be an example to you, in your head you know what is right and when you feel things that aren't right.  Don't let life get in the way of taking care of yourself.

Home Soon...Treatment Plan

By  — Mar 2, 2014 4:45pm

After 7 days in the hospital, it seems we at least have a plan for the next few months.  Between yesterday (Saturday) and Sunday, 5 or 6 different Doctors came - General Internist, Lung Doctor, Infectious Disease Specialist, and I don't even know who else :)

As of today:
  • The large mass in my left lung is a very rare lung infection that 100% of the time is initially diagnosed as Lung Cancer.  It isn't until biopsy that it becomes clear to the medical team that it is pus filled and not solid.  
  • The three tiny (smaller than a marble) nodules on my right lung, at this point, it is being assumed are the same infection.  They are too tiny for a biopsy.
  • My blood pressure drop each day for a few hours to approx. 70/40 - not sure why but seems to go up by itself
The treatment plan for now is:
  • Monday morning, 3/3/14, I will have  PICC line put in - that is a Peripherally Inserted Central Caltheter  - it is a small tube inserted into a vein in my arm and fed through until it reaches my heart.  A PICC line takes the place of a regular IV as it can withstand weeks and months of IV treatment.
  • I will receive antibiotic IV treatment for a minimum of 6 weeks at home.
  • I will have weekly X-Rays to monitor the size and shape of the mass/nodules
  • I will have CT scans once a month for the first 3 months to also monitor
  • There will be bloodwork several times a week to monitor various levels
  • I have to wear a surgical mask when out in "public" - doctors visits, etc., to prevent the possibility of my catching anything
  • Between the Infectious Disease doctor and the Lung doctor - I may be a driving back and forth between the two places
There is still no idea where or how I caught this.  They keep asking me if I went out of the country.  My response continues to be, "hell, I don't leave the county!!"  I may never know where this came from.

At this point, even though we don't know how I got this, we have to pray that the three small nodules are the same thing.  There is a 50/50 chance the smaller ones could be this infection or cancer - which is why we are monitoring them extremely closely.

So tomorrow morning, I will go down to have the PICC line inserted and then head home in the afternoon once Home Health Care has set up everything at home.  I will at home for at least 6 weeks (or longer depending on how my body responds to the medications)..... I foresee a lot of reading, crocheting, napping and boredom so don't hesitate to call me and stop by :)  I only have to ask that if you have a cold or sore throat, to please come another time :) <3

Still here but counting down the hours

By  — Mar 3, 2014 6:49pm

When I woke up this morning, I was looking forward to a busy day ending with it going home.  But that wasn't meant to be.  It wasn't until approximately 2:00 pm when they inserted the PICC line.  That was interesting.  It was done under local anesthetic while I was wide awake.  The catheter was insersted less than an inch above my elbow on the inside of my right arm.  It is done while they are viewing my vein with an ultrasound.  They had a bit of difficulty getting the needle in the vein and then had to move to another vein so my arm is quite sore this evening.

After the PICC line insertion was complete they came and told me that my health insurance approved everything needed for home nursing care and University Hospital Home Health Care would be taking care of me.  The only problem was, since it was so late in the day, they were unable to get a nurse to come out today so I have to wait until tomorrow morning after my 6:00 a.m. medication dosing.

The IV therapy will be 4 times a day - every 6 hours and will take 3 hours each time.  So basically, for the next 6 weeks, I will be either connecting or disconnecting an IV every 3 hours round the clock.

I hope to be home tomorrow by mid morning so the nurse can come and we can get setup before my noon dose is due.  We will begin bloodwork a few times a week, weekly xrays and CT scans approx. every 2 weeks.  We are still watching the three nodules on the right to be sure they are not cancer.  Sending hugs and thanks to everyone <3

Finally home - New Chapter

By  — Mar 4, 2014 2:28pm

After an eventful morning, I am finally out of the hospital.  The original plan was to discharge me right after my 6 am IV medication but shortly after my morning bloodwork came back and my Potassium was extremely low and my blood pressure dropped again - what the heck?  The waited 2 more hours and did the bloodwork again - this time it was fine, but, it pushed back my discharge until after my noon IV dose. My blood pressure went back up mid-morning as well.

It feels wonderful to be home and away from the hospital.  The home health care just delivered a box of supplies and medication.  Now I am awaiting the nurse to arrive around 4:30 pm to show Cocko and I how to administer the meds.  I already know I cannot do the IV hookup as the  catheter is at  my elbow so I can't use both hands.  So guess who gets to do it allllllll the time :)

Little things brighten my day

By  — Mar 5, 2014 6:50am

First night home - how wonderful was it to sleep 7 hours straight!!  And the first thing I did when I woke up was call Cameron before he went to school to let him know I was home.  This weekend when he came to visit me at the hospital he kept telling all the nurses and my doctor, "Nanna is going home tomorrow!!!" And, he meant it <3 He was a bit upset when the doctor told him I was still staying for a few days on Saturday, so when I called him and told him I was home, the first thing he said was, "Now I can come snuggle with you Nanna and you'll feel better." He gives me strength every minute of everyday!

Well, the update is that the IV therapy is not as I thought.  I do not have to change bags every 6 hours.  There is a pump that I wear around my waist that controls the IV each 24 hour period.  I hook up at approx. 5pm everyday and the machine dispenses the medication at 6pm, midnight, 6am and noon each day on it's own.  Each time it runs for an hour.  So at approx. 1 pm everyday I have to disconnect the pump and I can shower at that time.  Then I reconnect later in the afternoon.  The tubing is about 3 feet long and runs from my arm to a "fanny pack" around my waist that holds the pump.

The good thing is I don't have to push an IV pole and I don't have to connect and reconnect numerous times throughout the day - the PICC line is prone to infection that can be very dangerous since it is a line directly to my heart - so that was good news when the nurse showed us how to hook up :)

So begins my new daily routine for the next few months....

First Dressing Change

By  — Mar 6, 2014 3:57pm

Today's nurse visit was a bit scary.  Not only was she here to watch how I connect the pump, but she also had to draw blood and change the dressing covering the catheter.  Apparently the catheter is held in place by a sticky pad that has "latches" that grasp the tube so it doesn't move.  Taking the old dressing was a piece of cake, but to replace it, she had to press down quite hard on the area where the catheter goes in to latch it.  I won't lie - it hurt.  Now it is as sore as the day the put it in.

Taking blood and hooking it up is painless.  Of course, the nurses take blood.  The only thing I do is disconnect the pump/bag at around 1:00 pm and then prepare the new bag and hook back up at approx. 4:00 pm.

I also scheduled my followup appointments today.  Next week I go to the Infectious Disease Doctor, the Lung Doctor and my Primary Doctor.  Between those three appointments, my nurse twice a week and my daily preparation for my infusions, my days may be busy. Oh and weekly delivery of supplies :) I will find out next week when my next chest xray and CT scan will be scheduled as well.

But on a good note, 24 hours til I get to really snuggle with Greggie and Doodles...  and my boy, Cameron!!

First days without a nurse

By  — Mar 9, 2014 3:09pm

I am progressing - slowly. LOL!! Each day last week a nurse came when it was time for me to hookup to the IV to make sure I was doing it correctly.  Well, Saturday was my first day of doing it totally by myself.

I am comfortable with the entire process - from sterile technique to what hooks up to what - to priming the tubing (running fluid throughout to get the air out of the lines) and I thought I was comfortable with starting the pump.  Well, not so much :) I got everything hooked up, started the pump and it started beeping - not a good sign.  So I took out the battery and started over - again, beeping and I noticed instead of green light blinking an orange light was blinking.  I immediately called the nurse on call to have her walk me through and while waiting for her to call I attempted to restart the pump - well, this time, whatever I did worked because by the time she called there was no beeping and a green light was blinking.  Do I know what I did differently?  Absolutely not - so this afternoon will be interesting.

Also, today about a 1/2 hour before I was supposed to unhook, I started beeping.  Gregory was sitting next to me and my gut reaction was, "is that me or you?"  HUH?  I've lost my mind - why would Greggie be beeping :)  In this case, it was a low battery.

So overall, I think I have the hang of what I'm supposed to do - as long as there is no beeping coming from my body, I know I'm good.  This week will be a busy week though - lots of doctor appointments - Internist, Lung and then Infectious Disease appointments - all three on different days.  I don't think there will be any xrays this week as it is too soon.  That is what I'm counting down the days and minutes for - to see if the 3 nodules in my right lung have gotten smaller and if the large one in my right lung is changing as well.

Today, I also took a field trip - Gregory went with me to Giant Eagle to get bread and eggs.  I just wanted to get out for a few minutes.  I must say it was terrifying.  I know "germs" from anywhere or anyone can be extremely dangerous while I have the PICC line - I was extremely aware of how close I got to people and listening for sneezing and coughing - yep, I sort of felt like a freak.  But, it was nice just to walk outside for a few minutes.

First Doctor appointment since hospital discharge

By  — Mar 14, 2014 9:01am

Compared to my past 2 weeks, yesterday was a busy day.  The nurse came early in the morning so she could do my dressing change, tubing change and draw blood for tests so it would be ready by the time I reached the doctor.  Later in the day, I visited the Infectious Disease doctor at St. John's Medical Center.

The doctor spent almost an hour with me and we spent most of the time talking.  She showed me my test results from my hospitalization up to that morning.  At this point, there isn't anything she can do other than monitor my IV antibiotics and deal with side-effects (more on that later).

There are two blood tests that are the primary things we check each week:
  • C-reactive protein: The CRP test is a general test to check for inflammation in the body. It is not a specific test. That means it can reveal that you have inflammation somewhere in your body, but it cannot pinpoint the exact location. A normal reading should be at or near 0, meaning no inflammation.
  • White Blood Count:  Your body produces more WBCs when you have an infection or allergic reaction. Normal WBCs should be between 4.5 and 10
The day of my admission, when they had the original diagnosis of Lung Cancer, my CRP was 56 and my WBC was 18.  Both indicating something very wrong  As you know, there is one large mass on the right lung and 3 small ones on the right.

She started off by discussing the small ones.  They are very small.  Too small to do a biopsy but large enough to see on CAT scan.  Because they haven't done the biopsy on those, the jury is still out on a diagnosis.  A person with Lung Cancer is highly susceptible to a lung abscess.  That is why we have to watch the three small ones extremely closely.

The large one is, for sure, an abscess.  The complicating factor is that is is encased in solid material, thus the need for IV antibiotics to infiltrate it.

Now, back to the results.  As of yesterday morning's blood draw, my WBCs are 13 - lower, but still the same as my discharge day.  My CRP is 26!!! That means I am going in the right direction.  She explained the lung abscess is complicated by the solid outside and that will have a drastic effect on my next CAT Scan.

At this point, the only way to truly know my progress is by CAT Scan.  All 3 of my doctors agreed they will not do another CAT Scan until the last week of March - first week of April.  She repeatedly told me, "I am not looking for the abscess to be gone, but to be smaller.  I don't want you to get your hopes up that it will magically disappear.  This is a long process."  Not something I wanted to hear - but given my original diagnosis it's music to my ears.  At that time, the small nodules will be measured as well.  She said we need prayers to see them smaller or gone, as well.  If they are the same size (or bigger), then we begin a new regimen of tests and ways to biopsy those.

So, overall, I think it was a good day.  To see my blood test results on paper, in black and white, brought a smile to my face. It almost made up for my feeling like a freak - entering the hospital medical building in my face mask is really intimidating to me.  The doctor made a point to ask me how I felt about it and I told her.  She explained, I am NOT contagious for anything, but the antibiotic is so STRONG that it wreaks havoc with my immune system so I am susceptible to anything and have to be careful when going out in public.  I was never one of those people to use the sanitary wipes at the grocery store, or use Purell every day.  Well, now I am - when leaving the house I almost feel like I"m having an anxiety attack in the event someone sneezes or blows their nose around me - YUCK... I hate that feeling. I also have to be careful for irritants in the air - she said lungs are made to fight off any irritant - hence, coughing.  The abscess makes them more sensitive, so any irritant in the air could cause them to become more inflammatory.

Finally, she doesn't need to see me until April 1.  Then we schedule the CAT Scan and continue the IV.... Her final words were:  "See your lung doctor and primary doctor as scheduled but don't let them change a thing without calling me first.  You're on the right track, we don't want to change a thing yet."

So my week's progress - nurse on Thursdays to change dressing, tubing and draw blood. A delivery man once a week with my IV bags and medical supplies.  On a daily basis, I hook my catheter to the bag and pump at approx. 5 pm, it doses for one hour at that time then stops on its own, at 11pm, 5am and 11am it doses again automatically for an hour each time.  The tubing comes from my arm and extends to my waist where I wear a large fanny pack which contains the IV bag and the pump.  At noon, when the 4th dose ends, the bag is empty.  So I unhook the bag from my catheter and am "free" until 4:30 p.m.

Funny how my definition of FREE has changed over the past 2 weeks :)

Second doctor appointment and lessons learned

By  — Mar 15, 2014 8:35am

Yesterday, Friday, I saw my primary physician.  That is who started this roller coaster for me.

Within the practice are dozens of physicians - while my original doctor did the preliminary tests and ultimately admitted me - since then he has brought in 4 other of his partners due to the complexity of everything.  So yesterday I actually saw two of them.

Again, the appointment was merely an hour of talking - they took my vitals and listened to my lungs and that was it.  Again, we compared original test results from February to this week.  As with the day before, these doctors are happy my results on are a downward trend.

We discussed several things at length.

#1 - the three nodules in my right lung.  They are anxious to see what they will look like with the next CAT Scan.  There are many things they could be ranging from lung cancer to calcification from when I had chicken pox pneumonia when I was pregnant with Caitlyn to 3 separate abscesses.  As you can imagine, the waiting is the hardest so I keep trying to get their "opinion" if they really think it could be lung cancer as originally suspected bujt I can't get them to budge.  All the doctors say, could be, could be something else, just try to relax and we will know soon enough...ugh.

The most interesting thing was when we discussed my hospital stay.  There were several days when my blood pressure dropped significantly when the nurses did normal vitals.  There really wasn't an explanation for this so we are thinking it could have been my body's natural reaction to beginning the strong antibiotics.  Also, the day of my discharge my Potassium bottomed out - which postponed my discharge by a few hours - subsequent blood work and it has been fine.

And ultimately, we discussed my fevers for the weeks preceding my hospitalization.  The lesson learned here is - DON'T IGNORE WHAT YOUR BODY TELLS YOU!!  I did - for weeks and weeks.I finally went to the doctor on February 17th.  I knew I remembered having a fever on February 2nd (I had taken Cameron home and felt terrible driving him) but really couldn't remember when they started.  I remembered, on or about January 4, I had a low grade fever for a few days and just felt yucky.  I was fine for a few days (??) after that and then the fevers began.  So the best guess is 4 - 6 weeks i waited.  So many things went thru my mind when and why I din't go to the doctor - too busy, no other symptoms, felt fine while taking Tylenol.  The last couple of weeks I would go about my day as usual but was exhausted by the time I got home - for no reason - it's not like I was mountain climbing.

So now I have a general rule from the medical community for normal healthy people - do not ever let a fever last beyond 72 hours without seeing the doctor.  I asked, had I come sooner would this not be as complicated as it is - and the consensus is - no... a lung abscess is complicated and not easily recognizable in the early stages.  But, I am a good example for my family and friends - don't wait!!!!

So now I wait and enjoy the company of my pump friend.  The next major milestone will be April 1.  My CAT scan is scheduled for March 31, 2014.

As our parents always told us.... Do as I say, Not as I do!!!!

Slow Going Update

By  — Mar 22, 2014 8:25am

Not much to report this week.  Since I only see my nurse once a week, I'm on my own the other 6 days.  There really isn't anything new either.

My nurse comes each week to draw blood to see how my white blood count and c-reactive protein is going.  This week it was the same.  Neither has gone down anymore. My understanding is that this is normal and that is why I am on long-term IV antibiotics.  The good news is there are no more fevers but the bad news is there are still night sweats.  I wake up drenched.  Again, I look at this as a cup half full since the worst symptom is gone.

This week I also ventured out twice on my own.  Once to the pharmacy and once to the grocery store.
I went on days that it was in the 50's so it was wonderful to have some fresh air although I came home both days and took a nap :)  I did notice, the pharmacy was great  - grocery store - not so much.  I was out of breath by the time I got to the check out line and very tired.

No doctors appointments this week!! Next week, 3/26/14, I go to the Pulmonary Lung Doctor and then 3/31/14 is my CAT Scan with the followup appointment the next day to see how the CAT Scan looked - keeping my fingers crossed!  The nurse told me that there will be more tests scheduled as well - biopsies of the remaining masses - but because they are were so small March 1, the discussion is how to do them.

3 Days - 4 Doctors - Now A New Plan

By  — Apr 3, 2014 12:31pm

After 3 appointments this week it appears we are back to square 1 again - here is the update: 
1). The largest mass which is in my left lung and was the abscess is  1/3 smaller so it is definitely responding to antibiotic. They took me off the current antibiotic for 3 days because I am covered in a rash  = which is normal after 5 weeks of IV therapy) and will begin a new drug tomorrow, Friday, This new drug won't have a pump to disperse it automatically after I hook up - this time I have to hook up for a 1/2 hour every 8 hours to administer the dose.   Due to the rash, they also brought me 2 epipens in the event of another allergic reaction.
2). Now, back to the lung masses. The two small ones in my right lung are gone so it appears they were abscesses beginning to form which are GONE.
3). The second largest one is also in my left lung and  did NOT change size. Along with that, 4 lymph nodes got twice as big as a month ago and 2 more nodes are enlarged.  All 6 of these lymph nodes are located behind my left breast. 
All my blood work is now in the normal range so my three doctors determined the lymph node enlargement is not due to infection.  Based on the 2nd cat scan they are back to the original diagnosis that the one mass is probably cancer along with the lymph nodes in question. The questions they want answered are:

1) Confirmation that it is cancer
2) Did it start in the lymph nodes and spread to mass in lung or vice versa -

So, surgery is in my near future.  The mass is in such a position that they cannot needle biopsy it and because the lymph nodes are in such a place where there are so many, they don't want a needle biopsy for that either. That leaves surgery as the only option. Today I went for a Pulmonary Function Test to assess my full lung potential so they have a baseline for after surgery which is now my next step.  I have to have surgery to remove the 6 lymph nodes and the section of lung with the mass and the abscess so they can biopsy each and correctly choose the next round of medical treatment.

The infectious disease doctor and my lung doctor are discussing what surgeon to send me to. They want one who practices at both the Cleveland Clinic and University Hospitals so no matter what hospital I go to for surgery I would have the benefits of both. They are sending me to Joseph Lahorra, MD a Cleveland Clinic physician located at Fairview.  (Both my lung doctor and infectious disease doctor have privileges at Fairview so this works out great).

From what I understand, my lung doctor chased Dr. Lahorra down in the ICU today :) and gave him my history and information, he called his office staff to have my records faxed and I am awaiting a call to know when to go see him - it could be tomorrow - it could be next week.  The surgeons office told me they would call me this afternoon but of course, they didn't :(

If you know me well, you know I have to end this unhappy post with humor.... as I was leaving my lung doctors office yesterday my last question for her was:  "So if the mass and enlarged lymph nodes are right behind my boob, why aren't my boobs getting bigger!!!!" 

Wish me luck tomorrow when I begin the next round of antibiotics!

Friday Update

By  — Apr 4, 2014 1:22pm

After many, many phone calls, my doctor scheduled my appointment with the thoracic surgeon for this Monday 4/7/14 at Noon.

Early this morning my nurse arrived to do the dressing change and educate me on the new IV medication but unfortunately, she took one look at me and said no. Last night and this morning were probably the worst of the itching.  I know they say don't scratch but it is almost impossible.  The nurse was not pleased to see fingernail marks on my arms and legs :)

She called my doctor and told her how bad my rash was and it is still spreading.  I am now on a Prednisone Pak for 7 days to stop the reaction.  I take 6 pills today and decrease by one pill each day for a week.  We are aiming for Monday morning at 9:00 am to get me hooked up again - As it stands, I will have not had a dose of antibiotic for a week.

4/7/14 Surgeon Appointment

By  — Apr 7, 2014 2:19pm

Wow, what a long day already.  Started the day out with receiving my first dose of the new antibiotic - thankfully, NO reactions of any kind!!  And, the rash from last week is going away!! The steroids worked wonders.

Then out to the Thoracic Surgeon appointment.  He spoke to my doctor last week, reviewed the records that were faxed over and then, with me, reviewed the CT scan images.  His thoughts at this point are:

1).  Abscess in upper left lung is responding well to treatment.  It is a looooong process but the CT scan showed it is responding to antibiotics by getting smaller.
2).  The lymph node enlargement could be reactive to the abscess or it could be something else
3).  Mass in lower left lung is questionable.

A few things... he wants to do a CT guided lung biopsy of the lower left lung mass to see what it is.  He also wants to do another CT in a few weeks to see what the lymph nodes are doing. If the lymph nodes are still the same size or larger, he will do a separate biopsy of those.   And all that, we will schedule an appointment to meet.  Most people want these answers immediately, as I do - but, the problem lies with the abscess.  NO matter what the lower mass and lymph nodes show, he cannot do anything surgically while the abscess is there.  That has to be resolved completely before he can do surgery.

So, I wait for the biopsy to be scheduled, wait for the follow up CT scan and then will meet with him.  He stated he will develop a treatment plan at that time based on what all these results are.  In the meantime, my three times a day antibiotic will get an extra prayer each time that it works FASTER :)

4/8/14 Infectious Disease Doctor Appointment

By  — Apr 8, 2014 2:33pm

Nothing much new to report today except it is comforting to me to know my three doctors are all on the same page. While the Infectious disease doctor is very concerned about my lymph nodes getting larger, she understands not being able to do anything until the lung abscess is gone.  The three doctors spoke yesterday on a conference call and it appears the timetable is like this:

Continue IV antibiotic 3 times per day - beginning next week adding a 2nd antibiotic to be given 2 times per day - so 5 doses total per day
Week of 4/14 - schedule CT guided biopsy of lung mass
Week of 4/20 - results of biopsy
Week of 4/27 - possibly PET Scan (another scan looking for malignancy)
Week of 5/4 -   repeat Cat Scan of Chest to check lung abscess and lung mass

Soooo.... I wait....

Biopsy Scheduled

By  — Apr 11, 2014 8:18pm

Wednesday, April 16 - at 9:30 a.m. is the date!

The CT guided needle biopsy of the mass will be at Fairview.  I think this one may be a bit different because when they called to schedule it, the nurse told me I would be there until afternoon.  She stated they will give me light sedation so as a result I have to go to recovery for a few hours.  Which is strange because the last biopsy on the other mass in March, I only had a local anesthetic on my back and walked to my wheelchair afterwards.

The lung abscess is in my lower left lung lobe (near my back) and the mass that they are doing the biopsy on is near it - so this may be tricky because they don't want to get near the abscess.  Maybe that's why I have to stay for a while. It's not overnight - so I'm a happy camper.

IV's are still going smoothly. Three times a day.  Luckily, no reaction or rash from this medication.  But, my stomach is very upset  - which the doctor said may happen.  She recommended eating a probiotic like Activa twice a day so we shall see how that does - started that today.  Actually, she told me there would be multiple side effects from this new antibiotic and the stomach issue is the only one I have - thank goodness!

Officially Diagnosed - Adenocarcinoma, Lung Cancer

By  — Apr 21, 2014 5:46pm

The past week has been hectic and stressful.  As I had reported before, there are only 2 masses to contend with currently.  Both are on the left side.  The upper lobe contains the lung abscess and the lower lobe has the 3 cm. mass that has not changed.  After a biopsy on Wednesday, April 16, 2014, it is officially "Adenocarcinoma - Lung Cancer, Lower Lobe."

Today, I met with the Thoracic Surgeon.  My sister in law, Rita, and my niece, Lisa, were with me and we were full of questions.  (I can't express my love for both of you for going with me and helping me keep my head straight - xoxoxo)

At this point, the immediate step is to "Stage" the cancer.  Has it spread? Where? Etc.  Once this has been determined the full treatment plan can be placed.  According to the surgeon, he is still hopeful and thinks the enlarged lymph nodes are a reaction from the abscess.

A Mediastinal Biopsy (LYMPH NODES) is being scheduled hopefully for next Monday, April 28, 2014.  It will be an outpatient surgery under general anesthesia to test the lymph nodes.  Done as an outpatient, I should be home that evening.  Also, a PET scan and a MRI of the Brain will be scheduled.

As a general rule there will be 2 outcomes - ALL subject to change based on test results:
  • If the cancer is NOT found anywhere else, a Lobectomy will be scheduled.  He plans on removing the entire lower left lung lobe to remove the cancer tumor and also he is then going to remove an upper lobe "wedge section" to remove the entire abscess to have that tested to make sure it is not another tumor that developed an infection. Then, depending on what is found, chemotherapy may or may not be necessary.
  • If the cancer is found anywhere else, it will depend on where, etc.  Typically, if it is found anywhere else, the trauma that lung surgery causes is NOT worth it because removing the lung lobe won't "cure" anything.  At that point, it would be chemotherapy and radiation only.
ALL OF THIS is subject to change depending on what all the Staging Tests show.  The Nurse Practicioner has already called me and told me she is hoping to have the pre-admission testing this week, the Mediastinal Surgery next Monday, the PET and MRI mid-week next week so that a decision can be made as quickly as possibly to determine and begin treatment.

My IV"s have been stopped while we complete this testing, however, he wants my PICC line to remain as it will be helpful with the upcoming surgery/treatments.

So, while I have a lot of information - I really don't know very much.  I suspect this is what the future will hold as I begin this new journey.  My first step is to determine what Stage and then we will know so much more.

I thank everyone who visits my journal for your prayers and positive comments.  Please continue to keep me in your prayers.

And It Begins...

By  — Apr 22, 2014 2:25pm

Just a quick update to let you know most of the "Staging Testing" and the Mediastinal Biopsy Surgery has been scheduled.

Friday, April 25, 2014 will be Pre-Admission Testing.

Tuesday, April 29, 2014 will be an MRI of the Brain and a PET Scan among other bloodwork, etc.

Wednesday, April 29, 2014 - Meet with New Primary Physician and Surgeon

Friday, May 2, 2014 will be the surgery for the lymph node biopsy (Mediastinal Biopsy).

The results of the two scans will be available to me no later than the day before the surgery.

Currently, my Primary Doctor is from University Hospitals and my 3 other physicians are Cleveland Clinic.  Also, there will be an appointment with a new Primary Doctor to ensure all my doctors and entire medical team is part of the Cleveland Clinic so they all have access to all my reports, records, etc.  The funny thing is, I asked each Doctor - individually - for a recommendation and the three all gave me the same name - certainly comforting in the midst of this journey.

Once we have the results from all of the above my future treatment/surgery plan will be developed.

Scans Complete - Next...Biopsy Surgery

By  — Apr 30, 2014 8:24pm

This week was the week of my Brain MRI and Body PET Scan.  So.. here is what I know after all the scans, etc.... 

#1 there is no Cancer in any area of my body other than my chest - THANK GOD... 

#2 The PET scan showed 3 "hot spots". (
A positron emission tomography (PET) scan is an imaging test that uses a radioactive substance called a tracer to look for disease in the body. A PET scan shows how organs and tissues are working. This is different than MRI and CT, which show the structure of and blood flow to and from organs, The "hot spots" show where there is extra activity). - 1 hot spot was the upper left lobe abscess, 1 was the lower left lobe cancer and 1 was the left hilar lymph node. The activity in the lymph node could be either enlarged due to the abscess or cancer.

The surgery I have this Friday is a Medinoscopy - to see if the cancer has spread to the lymph nodes in my chest. I assume it will take a few days for those results. I asked the nurse again to today and she confirmed....if the only cancer is the tumor in lung then removing the lobe will "cure" it... if it is in a "left lymph node" (meaning the same side of my chest that has the cancer)  I will do chemo after surgery with no assumption if it is cured... if it is in any lymph node on the right of my breast bone they will not do any type of surgery because they cannot cure it and chemo and radiation are the only option. So this surgery Friday will give me all those answers.  My surgeon's office defines "curing it" by removing everything.  Unfortunately, if it is in the lymph nodes, there are microscopic cells in other areas of my body that will reoccur at a later date so in his mind it is not cured.

So Friday is the next big step - after the pathology results are in I will know what Stage the Cancer is and begin whatever is necessary to GET IT OUT!!

Surgical Biopsy Date Changed

I woke up this morning and took a deep breath realizing this craziness will settle down once I know exactly what's going on... knowing the biopsy surgery was tomorrow... BUT ...

With everything that has occurred since February 17th, I should have expected it - the surgeon's office called and said he has an emergency heart surgery tomorrow so my surgery has been moved to Monday morning at 7:30 a.m.

A Quick Check-In

I survived the surgical biopsy today and have been heavily (and I mean heavily - oxycodone) medicated all day but wanted to check in and let you all know I am home :) Now, awaiting biopsy results.

I will post all the details in a day or two but for now I thank you for all the warm and loving text messages I received today.   For now, I have a 2 inch incision on my chest, just under my neck, and the incision site it is much more painful that I would have thought.  Also, I have excruciating pain in the back of my neck which I didn't expect.  I had to go online to learn that during this procedure they hyper-extend your neck and that can cause significant pain for a few days - boy, they weren't kidding. Weird thing is, the pain is primarily on the left side of the back of my neck.

More later - back to my recliner and heating pad now - my love to all of you!!

Staging Complete

80 days and finally I know what is going on and where I am headed - partially.  Monday, was my surgical biopsy. Gregory and I arrived at 6:00 am as they told me to do and we sat there for a 1/2 hour until 6:30a.m.  Not a great way to calm the nerves.  But once they called me back it was busy.  Hooking me up to all the monitors, talking with the entire surgical team individually and finally, talking to my surgeon.  My surgery was scheduled for 7:30a.m. and he walked in at almost 8:00 a.m. :)

He looked over the PET scan report and then said he wanted to look at the images himself.  This is the situation:
  • Adenocarcinoma in Lower Left Lung (cancer)
  • Abscess in Upper Left Lung (infection)
  • The 6 lymph nodes in the center of my chest that are enlarged did NOT show up on PET scan as hot spots.  He said this represents that they are enlarged due to the abscess, however, this is what he took samples of to biopsy
  • A 7th lymph node in the Lower Left Lung was VERY hot - meaning it has spread to my lymph node(s).
This makes me a Stage 2 Lung Cancer patient.  The way it works is - if the cancer has spread to any lymph nodes, if they are on the same side as the primary cancer it makes me a Stage 2.  If it is in a lymph node on the opposite side, it makes me Stage 3 which is not operable.  So, I suppose, the "good news" is that the lymph node is on the same side so he will do surgery.

The bad news is because of the location of the lymph node with cancer and the abscess, he cannot do the minimally invasive VATS (Video Assisted - sort of like laparoscopy) surgery.  He has to do the BIG sugery which is a 12 inch incicsion.  He will remove the entire Lower Left Lobe, a section of the Upper Left Lobe where the abscess is to remove it completely and the surrounding lymph nodes.

After surgery, it is normal to be in ICU for 4-6 days and in the hospital for a total of 10-14 days.  I understand this is necessary because of multiple chest tubes and due to the immense amount of pain they use an epidural for several days.  (Are we having fun yet??)

Now, because it is all on "one side" it is operable because the medical profession views it as "curable."  Meaning they can possibly get it all.  However, because it is in a lymph node, it has spread.  Our lymphatic system is the filtering system for our bodies so obviously there will be microscopic cancer cells somewhere so after surgery I will begin chemotherapy.  No idea when or for how long.  I have to meet with several Oncologists and a Cancer Team to determine treatment(s).

My surgery has already been scheduled - it will be Tuesday, May 20th.  I should have the biopsy results from the surgery this past Monday later this week.  Because none of these lymph nodes showed up on the PET scan, my surgeon is very confident they will be benign.

From Monday's surgery for the biopsy, the back neck pain has almost gone away.  Boy, was that scary on Monday.  The incision is painful as it has a burning sensation under the dressing and my chest feels like something heavy is on it.  My nurse hit the nail on the head when she said use a recliner.  I tried to lay flat and that was a disaster so sleeping on an electric recliner is wonderful.  I was taking 2 oxycodone when I got home yesterday and this afternoon a 1/2 did the trick.  That is one drug I really don't want to take too many of - for those of you who I talked to on the phone Monday afternoon, you know what it does to me - TOTALLY STONED!!

Official Biopsy Results

Can we shout YAY!!!! Biopsy from Monday's surgery included 4 lymph node samples from my mid-chest - NO CANCER in any of them which makes it officially Stage 2 Lung Cancer with metastasis to the Hilar Lymph Nodes.

Finally some "official" good news.  It's funny to me how telling me "your lung cancer and metastasis is confined to one side" can be good news - but that just goes to show how priorities and emotions have changed since February 20, 2014.

On a side note - still recovering from surgical biopsy.  NO neck pain anymore and last night, although I slept in the recliner, I slept for 6 hours straight - that is the most I have slept since last Saturday :)  Incision site still painful but appears to be healing nicely - had to change the dressing today (which hurt like hell).

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