Tuesday, May 27, 2014

New Chapter Begins Today

6:30 a.m. and I am about to start getting ready to head to the hospital.  I have to arrive at 9:00 a.m. and surgery is scheduled for 10:30 a.m. 

There wasn't much sleeping going on here overnight.  I would fall asleep for about 15 minutes and wake up abruptly and then about an hour later fall asleep for another 15 minutes and repeat and repeat.  I'm not surprised nor am I tired because I anticipate sleeping through the next few days.

I will have my cell phone with me and hope to post a "hello" as soon as the meds wear off enough to see what I type :) In the meantime, if you want to check in, message my sister Maria or my son Gregory on Facebook and they will give you an update.  I still don't really know how long I will be in the hospital.  Various nurses have told me 3 or 4 days up to 7 to 10 days.  What I do know is that it depends on how long I have to keep the chest tubes in.  

Even though the last few months have been stressful I truly believe today begins a totally new chapter in my life.  Actually, a new book.  No matter what the future holds I know in my heart things will never be the same.  

P.S.  I hear John Travolta is in town filming a movie so if you see him, feel free to send him my way to visit me :)

Friday, May 23, 2014

Tuesday - It's A Go (So Far)

Oh I feel so bad now.  My rant last Tuesday when my surgery was rescheduled twice must have REALLY made an impression on the Surgery Department at Fairview - Cleveland Clinic.  

First the surgeon's office called to confirm Tuesday then she told me the Surgery Department would be calling me in a few minutes.  Then woman who schedules all surgeries, Eileen, called to give me instructions for Tuesday.  (She was also one of the unfortunate people I yelled at last Tuesday).  

Eileen said she wanted to personally call me to give me the details for arrival time because she wanted me to know that "we know we have put you through the ringer mentally and we want you to know you are important to us and we are ready to serve you on Tuesday - with all the best experts in Northeast Ohio."  She went on to say that she had personally spoken to my surgeon after the episode this week and everyone was aware that my surgery must take place soon. 

Then a few minutes later, the surgeon's Nurse Practitioner called me - she is the other person I yelled at Tuesday...again, sweet as could be - just checking on me to make sure I knew it was a go for next week!

Uh oh... was I really that bad when they called - YES!!!  I kept apologizing to each of them for taking my anger out on them when it wasn't their fault but none of them wanted to hear it - each of them were extremely apologetic, professional and concerned.

So as of right now, my surgery is scheduled for Tuesday, May 27, 2014 at 10:30 a.m.  I am still extremely confident in my surgeon.  He is truly one of the best Cardiothoracic Surgeons in town! And unlike last weekend, he is not on-call so there is no way they will reschedule me again :)

Wednesday, May 21, 2014

The Anger Has Subsided

92 days, a prolonged diagnosis, Surgical Biopsy rescheduled from original date, now big surgery rescheduled 3 times.  Now, it is scheduled for Tuesday, May 27, 2014 at 10:30 a.m.

Today was not my best day - by far.  Let me start by saying, I really like my surgeon.  I understand he is a Thoracic Surgeon and does everything from Cardiac Bypass to Heart Transplants to Lung Surgery.  I understand when someone has a heart attack they need their surgery ASAP.

What I don't understand is how many times can I get pushed off and rescheduled.  I know, that sounds horrible, doesn't it?  When the Nurse Practitioner called yesterday, I really, REALLY went off on her.  I think it was a culmination of the past 92 days and I feel really bad that I spoke to her that way - but, c'mon, how many times?

She apologized over and over again that the doctor had 2 people admitted today due to severe heart attacks and they both needed surgery tomorrow.  At one point she said, "I'm so sorry but a heart attack patient does take priority."

I'm ashamed to say my response was, "when will I be the f****ing priority - after my cancer spreads?"  I was upset and crying by this point so I really don't recall her answer - not that it mattered anyway.  She kept saying she was sorry. 

So, I have now hit my lowest of the low - I got angry with the Nurse Practitioner who was nothing more than the messenger.  I did call my Pulmonary Doctors office and when I told her nurse, she was just about as angry as I was so tomorrow should be interesting to see if I get a phone call from someone changing it again.

I just pray God will grant me the patience I will need during this journey as I know things will change quite often.  So many emotions all at the same time - I am still learning what my new normal will be as I continue on this journey.

Tuesday, May 20, 2014

Tomorrow Is The Day *UPDATED AGAIN*

This post will be short and sweet because I'm so pissed right now - 5 minutes ago the surgeon's office called AGAIN and rescheduled me for NEXT TUESDAY - May 27, 2014 at 10:30 a.m. 

Yes, I went off on them and Yes, I'm pissed...more later when I'm not so angry :)

Tomorrow Is The Day *UPDATE*

92 days and the day is finally here!!  What a fiasco this has been.  My surgery was originally scheduled for 7:30 a.m. today.  Last week they called and changed it to 7:30 a.m. tomorrow morning - I just called to confirm what time to be there tomorrow and NOW,  my surgery is scheduled for 2:30 p.m. tomorrow (Wednesday).  I've been given conflicting answers in terms of how long I will be in the hospital - one nurse said 7-10 days total and another said 3-4 - so, who knows.  I just hope they have good drugs!

The surgery is a Thoracotomoy Lobectomy.  Removal of the entire lower left lung lobe, removal of a portion of the upper left lung and removal of lymph nodes.  The expectation they have given me is I will have lots of tubes and will be in ICU for a few days (which is normal).  The procedure is expected to last approximately 4 hours.

My technology is going with me - my cell phone and my Kindle - so I will post something as soon as I can.  

Just remember - 

Sunday, May 18, 2014

Never A Dull Moment

What a great weekend.  The weather was great, Cameron and Maria (Doodles) were here for the weekend, and on Sunday, Andrew, Caitlyn and Jimmy camer over for the afternoon.  It was great having them here the weekend before my surgery - and it was a great weekend... with the exception of the intense itching that was going on under the dressing for my PICC Line.

I had noticed the tape/dressing over my PICC Line was itching much more than usual the past few days.  I even noticed a "few" blister looking things. I kept telling them, "it's ok, it's just my skin irritation/reaction to the tape for the past 2-1/2 months." Well, Caitlyn and Jimmy arrived and they both yelled at me, "it's infected - call your doctor."  After arguing with them, I finally gave in and called the Home Visiting Nurse, Rhonda.

Rhonda called. She came over.  She changed the dressing and confirmed it was pus filled blisters all over the area of my arm that was covered with the 4" square clear dressing.  The problem was that 2 of the blisters were right at the insertion site for the PICC Line so it looked, initially, as if the insertion site was infected.  Although my IV antibiotics ended 2 weeks ago, I was still maintaining the PICC Line to be used for surgery and subsequent chemotherapy.

After cleaning the site, she agreed it was just the blisters from the skin rash and not an insertion site infection. The nurse called my doctor and they decided the PICC Line should be pulled out because they didn't want to take the chance that the pus would get inside the insertion site. I have never had sensitive skin my entire life, but since this journey started, the allergic and irritation on my skin has gotten worse and worse.

So, while I am thankful Caitlyn and Jimmy convinced me to call so I could avoid a massive infection, I am also a bit depressed they took out the PICC Line.  My veins are shot since this started so getting an IV in me on Wednesday for surgery is going to be an epic event.  I guess this means I'll be getting a port for chemotherapy...ugh, another procedure.

Caitlyn and Jimmy - you can now officially say...... "WE TOLD YOU SO"

Saturday, May 17, 2014


Friday afternoon phone call:  "Hi Mrs. Toth, so sorry to let you know the doctor has an emergency heart surgery we have to put on Tuesday, so we are moving your surgery to Wednesday morning at 7:30 a.m."

It was very difficult to get upset because I was looking at this sweet face when they called.  

Recliner, Salami, Carrots & A Movie With Nanna
So, now we wait for Wednesday morning :)

Wednesday, May 14, 2014

Optimism and Realism: Nanna Has A Big BooBoo

As a mom, the hardest thing I had to do was to tell my 7 children I have cancer and how it it would impact all of us.  Maternal instinct provides protection, not sadness.  I have been able to tell them details over the course of the past few months, and, in small doses.  Luckily, for me, my children have risen to the occasion and showed me how much they love and support me.  While I selectively provided them with the information over the course of a few weeks, the fact is, they are still my children - my babies.  I am their mother and I am causing them to suddenly, and seriously, think of a time without me in their lives.  I know they are thinking and thinking and thinking.  Each of them will call me at various times of the day, staring with, "Mom, can I ask you a question."  Each of them, within their own personality, asks me different questions with different tones in their voice.  Having given birth to these wonderful human beings, I know each of them, and know how to answer each question as asked by each individual.  While each child will always get an honest answer, I know which ones want the details.   I know which ones not to give details to.  Love and Honesty! Optimism and Realism.  That is what this journey will be. The love and support of my children is my strength. Without that, I don't think I could continue the challenges ahead of me.  It is 2014 - I can be optimistic and realistic! Having lost my mother to breast cancer while in my 20's, I know the importance of being told the truth and knowing what is going on.  I know what they are feeling as I tell them and I now know the love my mother felt when she told us..... But....

Telling a 7 year old is a new experience for me.  Since my initial hospitalization when Cameron became very upset because the Doctor wouldn't let me go home, I have wrestled with how to tell him "Nanna is sick."  My heart melts when I see him - when I talk to him - when I hear his voice - and when he got so upset in February, I knew this would not be easy.  I talked it over with Courtney (Mommie) and came up with a plan.

He just melts my heart

The main reason I talked to Mommie and asked if we could tell him the truth was a direct result of a conversation I had with my cousin Shocky just last week.  

Cousins Mary, Shocky and I were discussing what the doctors had told me about having to go through chemotherapy.  I used the explanation, "just like when Mom had her breast cancer, they removed it all, but because it was in her lymph nodes, it came back 3 years later in her bones."  Shocky says to me.....  "WHAT?? Your mom found out she had cancer and died 3 weeks later!!!"  All I could do was laugh.  As usual for our Shahinian side of the family, I accused her of having a "Shahinian moment" when in reality, she and I realized our parents didn't tell her because she was so young - 7 years old when mom got sick and 10 when she died.  She even called her sister, Judy, to confirm what I was telling her was the truth.  Our family was so close we would see each other all the time - and I mean all the time - so how she didn't know how ill mom was, is a mystery to me. 

But, on the other hand, that was 30 years ago, so I totally understand why our parents didn't tell her until the end. No one hardly knew what cancer was in the 1970's and 1980's much less the treatment(s) involved.  We know much more now (well, I pray we do) and while I don't want to put Cameron on overload, I also don't want to lie to him either.  He and I are way too close - he knows the minute we see each other.  I immediately realized, I don't want anyone 30 years from now to say, "I didn't know."

Cameron has not seen me since my surgical biopsy so today he saw my "boo boo" on my chest for the first time.  The look in his eyes when he said, "Nanna, what happened?  Are you okay?" almost brought me to tears.  But, I sucked it up!!  I have to tell him the truth - or at least a version of the truth that a 7 year old can understand.

Mommie and I decided to tell him - "The Doctor found bad germs in Nanna and he has to take them out, so Nanna has to go to the hospital next Tuesday and then will have a big booboo."  

Whispering: I love you Nanna
He knows the days of the week, and counts down to when he is coming to spend the night, so he immediately said, "so today's Wednesday, then Thursday, then Friday and you will pick me up and I will stay with you Saturday and you'll take me home Sunday, then Monday, then Tuesday you go to the hospital, then Wednesday I'll come see you, then Thursday you'll go home."

His response was basic and honest.  As hard as it was to tell my children, who are grown, how to tell a 7 years old is beyond my realm of comprehension.  He doesn't understand but yet he is so smart and he knows something is going on.  Mommie and I agreed, we have to tell him the truth but in the most basic way possible. 

Just the basic facts. I don't understand why this happened.  My children don't understand.  So how should I expect a 7 year old to understand.  Optimism and Realism - I think those will be my two words to carry me through my journey.  Not only for myself, but for those I love the most.  

The 8 loves of my life - the reason I breathe

Tuesday, May 13, 2014

Getting Things In Order

While there have been no tests, scans and other medical visits this week, it still has been a busy week.  My surgery is 7 days away and I am getting a bit nervous.

An update from my last post where I mentioned they wanted me to come in for a wig fitting - I don't think I'm going to do it.  For several reasons:

  • Summer is coming and I get hot when it hits 65 degrees, so the idea of having a wig on my head in the 90's is not appealing
  • I've always had extremely short hair so the idea of losing it is really not that upsetting to me right now
  • And finally, I'm processing all my energy to getting rid of this beast - not covering it up
I expect there will be many people who disagree with this and I may come to regret it, but for now, Caitlyn and Maria can get ready to "paint my head."  After my last post, Maria asked, "Mommie, are you really going to lose your hair?" I replied, "yes m'am."  She told me that I should be ready for her to cry because in her mind that is when I will look sick - but then she told me, "don't get wig(s), get a do-rag, let me pick one out." So there you go!  I understand the nurses logic in getting fitted now while I feel well, but I just can't go there just yet.  Besides, if it was good enough for my momma, then it's good enough for me <3

This week has also been a constant ringing of the phone - medical professionals, friends and family.  Having my babies spread across the US is hard when you want them with you now - but having them call, Skype and Facetime brings a smile to my face.  

This week has also been spent doing the final preparation before surgery - I spent 2 hours on the phone with a Social Security Disability Attorney on Monday and have officially filed for SSDI.  Stage 2 Lung Cancer  is on Social Security's Compassionate Allowance List, meaning, my claim will be processed much quicker than the normal "years" of waiting.  And today, I received a followup call from them - less than 24 hours later - to confirm my information and to let me know that "my condition" meets the expedited list - Oh Yay!!

The best part of the week's news is that I don't have to go back in for Pre-Admission Testing - when you have a PICC Line, nurses are the only ones that can draw blood.  But, Pre-Admission Testing people don't have RN's sooooo....my home nurse is going to take care of that this Thursday which is better than last time - they had to poke my arm the traditional way and it took 6 pokes to get a vein - hence, my need for a PICC Line :)

Friday, May 9, 2014

My New Normal

Starting this past Monday with my surgery, I am beginning to come to grips with what my new normal will be - well, somewhat.

In no particular order, the week included (2) visits from my nurse.  Once to draw blood and once to change my PICC Line dressing and my surgery dressing.  A phone call from the health insurance company to "confirm" I was having surgery and to let me know they approved it.  A phone call from the Moll Cancer Pavilion recommending I go next week to be fitted for a wig. And finally, lack of sleep.

The nurse visits didn't surprise me and while I did sleep quite a bit until Wednesday due to the pain meds, the latter part of the week I barely slept more than an hour at a time and with a total of less than 3 hours sleep each night.  The lack of sleep, I think, is a combination of nerves, anxiety and pain in my incision. Last night, Thursday, I was still wide-eyed at 4:45 a.m.

The insurance company  - Medical Mutual of Ohio - while I can understand and appreciate them calling to tell me my surgery and subsequent treatment is covered, why did they have to call me and ask, "are you aware you are scheduled for a thoracotomy/lobectomy and chemotherapy." Really?? I almost laughed, then replied, "did you really just call me to ask me that??  In what universe would I NOT know this??"  The poor woman - I felt bad after it came out of my mouth.

And if that wasn't bad enough, today - another phone call.  From the Oncology Head Nurse - she is preparing my chart information for surgery so they can come see me while hospitalized and coordinate my therapy.  She called to tell me that they recommend that I go get fitted for "my wig" this week BEFORE my surgery.  She went on to say that chemotherapy will probably begin before I am back to normal from surgery since this surgery takes a very long time to recover from and... that it is better to select a wig while still feeling like myself.  Myself - I forgot what that was back in February LOL.  I didn't tell her but my girls very graciously have asked if they can "paint" my head when the time comes - aren't they sweet <3

Wednesday, May 7, 2014

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).

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!!

New Site For Journal

The last few weeks have been so comforting for me to share with my loved ones how my journey is progressing.  The one thing that disturbed me was the advertisements all over CaringBridge for donations - so I decided to start journaling on Google's Blogspot.  I know many of my family have friends have set up to be notified when I post on CaringBridge and you can do the same on blogspot.  Look on the upper right for the "follow by email."

The comments, messages, and love that I read from each of you everyday brings a smile to my face

To read my journey since February 17, 2014 until now -  - CLICK HERE.