Friday, June 27, 2014

No Radiation Needed......Yet

Today was my consultation with the Oncology Radiation Specialist.  He is located in the same building as my Surgical Oncologist so he already had access to my records.  He was extremely informative and knowledgeable.

He started by saying that a Stage 3A Lung Cancer such as mine would usually benefit with Surgery, Chemotherapy and Radiation.  But then he went on to explain that he is not recommending Radiation...yet... for me at this time.

He stated that the process is 6 weeks long - I would have to go to the hospital everyday for 6 weeks for an 8 minute zap of radiation.  But the issue is that there are two main side effects.  Pain and irritation in the esophagus AND when they pinpoint where on the lung to zap they need to go outside those margins a bit to make sure they get it all.

That is the real issue here.  My left side has hardly any lung left so if he has to zap more around where the tumor was, he will damage what little lung I have functioning on the left side.  He also felt the pain in my esophagus is not worth it at this time.

Also, he said that they don't do Radiation Therapy until Chemo was over anyway so he thinks a better plan is for me to  be re-evaluated for Radiation after I complete all my cycles of Chemotherapy.

Preparations For Chemotherapy

Chemotherapy!  It's not a word I wanted to hear and certainly not something I want to go through. But, for those of us with cancer, we often don't have a choice.  

I remember how terrified I was when Mom started her Chemo back in 1980 - it certainly has changed.  But there are still so many of the same questions.  Will I be sick? Will I have a reaction to the medication? Would I be in a room by myself or with other chemo patients? Will I lose my hair and for how long?  Will I have blood level issues?

When I was told I have cancer and have to go through Chemotherapy, it didn't really sink in.  On Tuesday, June 24, I had my first meeting with my oncologist at the cancer center and let me just say - IT IS REAL NOW!!  He laid it on the line, bluntly, honestly and professionally.  Then his nurse planned out my next 3 weeks in preparation for my first cycle on July 11th.  From consults to injections to  classes - they coordinate everything for you.

Over my lifetime I have experience through myself or family members MANY types of illnesses but none of them prepare you for what lies ahead like cancer treatments.  Cancer SUCKS but so far the kindness and compassion of the medical professionals really help to calm my fears.  There is almost the sense that all these other people "have cancer with you."  That is hard to explain, but they really involve themselves in every appointment, decision and task at hand to make it easier for me.

Wednesday was a Chemo Class, Thursday was a Wig Fitting and today is a Radiation Oncologist Consult.  All of this is in preparation for what is to come.  So many people on my team!! Next week is bloodwork, B12 injections, and more testing.  The following week is surgery to place my MediPort in my chest - then the big day - July 11th we begin chemo.

And finally, as I really do not see myself as a wig type person, I did go get one last night.  It is recommended you get it while you still have your own hair - so I did.  I really think I will be in scarves and turbans more than anything but at least if I have to go out I will be prepared.  

That being said - this is NOT the wig I picked - Blondes may have more fun but I am not a blonde LOL.  We decided to have fun with the experience.  I tried on my natural hair color, blondes, even totally gray hair.

Oh boy!!
One of the biggest adjustments is still mentally - I still can't totally realize I no longer work and never will again.  My Social Security Disability Retirement was approved in May and will take effect September 1, 2014.  I still find myself at night thinking "OMG, you're still awake and you have to get up early" while the truth is... my sleeping habits have drastically changed - I am up late (really late) and I sleep until 10 or 11am (on and off like napping).  

Physically it is all coming together.  The pain is much better now that the chest tube is out but overall there is still pain from the incision and surgery in general.  And of course, I get out of breath VERY easy.  The one thing I miss the most is cooking.  I try to cook quick little things and cannot get over how exhausting it is.  Time. That will heal all and hopefully I will be cooking again very soon :)

Tuesday, June 24, 2014

Treatment Finally Getting Started

Today, 4 weeks after surgery, I met with the Oncologist and his nurse.  My sister Maria, daughter Maria, and two sons - Pootie and Gregory, went with me to be sure we all listened to what he had to say.

Here it is in a nutshell:

  • One tumor in upper lobe, one tumor in lower lobe, 2 lymph nodes had cancer and one was 2 mm away from the major artery - because of this, I must have chemotherapy as there is a 50/50 chance of recurrence.
  • Tomorrow, I have to attend a "chemo class" to learn about the details of treatment
  • Friday, I have a consult with a Radiation Oncologist to see if he recommends Radiation
  • Next week I will have a port put in my chest to receive chemotherapy
  • Chemotherapy will be in 4 cycles.  I will go ONE day for a 1/2 day of therapy and this will occur 4 times spread out 21 days apart.  
  • There will be two drugs given to me as my "cocktail" for chemotherapy
My actual first chemotherapy session is Friday, July 11th.  They don't want to start it too soon as they want the wound from my chest tube to heal and for me to build up some strength.  I actually spent the afternoon at the hospital, then went to the grocery store and drove around one of those electric wheelchairs for a 1/2 hour.  The pain is extremely manageable now that the chest tube is out - I just feel extremely tired :)

What a group at the first chemotherapy information session

My version of Wii Mario Kart
By this time I was ready for bed


What is the definition of heaven?  Having your chest tube removed after 4 weeks!!!!! Absolutely!!!

Yesterday, I spent 2 hours at the surgeon with manual tests and then an X-ray to find out the chest tube could come out.  It was literally instant relief.

While I am not pain-free, the constant stinging, pulling and pressure from the tube are gone making it easier to get up and down.  And today, I got to take my first real shower in 4 weeks - now that was FANTASTIC!

So now that the chest tube is gone it is time to start rehab and recovery.  We meet with the oncologist today for the first time so I am sure he will give us lots of information but my pulmonary doctor wants me to go thru Pulmonary Rehab before starting chemo (not even sure what that is).

Onward and forward, finally!!

Saturday, June 21, 2014

4 Week Update

Tuesday will be 4 weeks since my surgery.  Although, I still remember very little of the first two weeks, these last two weeks are draggggggggging.

My weekly visit to the surgeon yesterday proved that my chest tube still cannot come out.  I actually saw the Nurse Practitioner and she said while it is improving, there is still an air leak, so they can't take the chance of removing it.  As a result, I am going back on Monday to see the actual surgeon to see what we can do.  4 weeks with a chest tube is too long and now they are afraid of infection.  

Tuesday is our big meeting with the Oncologist for the first time.  I know he will not be happy that the chest tube is still in as he will not begin chemo until I am fully recovered and I can't even begin to recover until this darn thing is out.

Pootie is here this week and Cameron is here for the weekend - both are fantastic <3  Tomorrow, Sunday, we have a family picnic - while I am looking forward to that, it will certainly require the most energy from me in over a month - should be interesting.

Will update more next week after both appointments.  Wish me luck :)

Tuesday, June 17, 2014

Slow and Steady

Today is 3 weeks post-op and 11 days home.  It has been a slooooowww ride.  As with the everything else since my journey began in February, nothing has really gone as "planned."

Friday's visit to the surgeon to potentially remove the chest tube was a NO go!  There is still an air leak and quite a bit of drainage, so the plan is to go to the surgeon's office weekly until they determine it can be removed.

Overall, I am feeling a bit better.  The first two weeks the pain was horrible!!  But it wasn't just in my back - it is in my chest and upper abdomen as well.  And stomach pains.  I realized last week that the heavy pain meds I was on was probably making the stomach pains worse.  So, Friday night I took my last Dilaudid.  WHAT A DIFFERENCE!!  While I still have surgery/incision/chest tube pain, my stomach is much better.  My appetite has come back a bit - not fully because things still taste very funny to me (not sure why that is).  I take Tylenol Extra Strength and it is just enough to take the edge off.  

My energy level is still virtually absent.  Just getting up to make a cup of tea is exhausting.  They tell me this type of surgery has a long recovery period and that is normal but boy, it's been 3 weeks so I would have thought by now I'd be walking, etc. without needing a nap afterwards :)

Just continuing to take one day at a time - it's all I can do.  Since coming home, I have had someone with me 24/7 each day with the exception of yesterday.  I was home alone from 8am to 5 pm.  I have to admit - I had a bad spell mid-day.  Just laying on the recliner, resting, and thinking and the last few months came crashing down on me.  I had my first "oh pity me, crying spell."  The why-me? and the how can I do this?  I finally pulled myself together and realized I cannot think of what next month holds - I have to think of what today is - how I feel today and what I can do today to make tonight/tomorrow better.  

And tomorrow, Pootie is coming home to visit <3 his momma!!  That is what helps me make it through each minute and each day.  My children and grandson!!  This week will be a busy week as Pootie will be home for a week and this weekend is a Toth family picnic.  Just to spend time with family and feel the love all around me is what makes the world go round.

Thursday, June 12, 2014


Well, I've been home since Friday, June 6, 2014 but it has been such a rough 2 weeks that it has taken me this long to write a post that made sense. 

The surgery was much more involved than they initially thought.  The end result was that they took approx. 90% of my left lung and lymph nodes.  There were two tumors.  One in the upper lobe and one in the lower lobe.  According to the surgeon, they could not take the lobes completely as I would not have any quality of life afterwards so there was a "meeting" while I laid on the table with several of my doctors and it was decided to remove the entire upper lobe and 90 % of the lower lobe.

The surgery was 7 hours in length.  I was in ICU from Tuesday to Thursday night.  I then spent another 8 days on the regular floor while each day they attempted to remove the chest tube which was unsuccessful.  Eventually, I was sent home with a chest tube which I still have.  I would have to say at this point the chest tube is the most painful as it is placed between two ribs.  Tomorrow I have a doctor's appointment and I hope to have it removed then.

While I was in the hospital, my chemo doctor came and visited and briefly discussed what happens now.  After a complete surgical recovery, approx. 2 to 3 months, I will begin chemotherapy.  It will last approx. 6 months, then another 6 months of maintenance therapy.  They have scheduled a visit with him for June 24 for him to go over my pathology reports, tumor reports, etc. so he can discuss the type, length and intensity of chemo.

Tomorrow will be one week since I came home and while I have the chest tube I am not allowed to stay home alone. So I have what I call my "babysitters."  My niece, Michelle and two daughters, Maria and Caitlyn have taken care of me during the day and my sister Maria on weekends and nights.  I don't even know what I would have done without them.  While I sleep 20 hours a day from the meds, just knowing they are here is a blessing.  I don't move very fast.  Just to get out of the recliner and get a sip of water takes about 20 minutes - UGH!!

Some of the amazing things to me are how much my taste buds have changed.  The first week I hardly ate at all  -  nothing.  Now, I eat but nothing taste like it should.  I have not had a cup of coffee in weeks.  Those who know me know that is a miracle.  The smell turns my stomach so I am drinking tea.  

I am also very swollen.  The nurses said that may take some time to go away.  I have oxygen at home which I have to wear when sleeping.  It seems my blood oxygen level drops significantly when sleeping since surgery.  And when walking I have to wear it as well.

It's been a hell of a 2-1/2 week period.  I'm sure as time passes I will remember more but for now I am just trying to get thru each day.