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"

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 :)

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