Sunday, April 17, 2016

Port Surgery (GRAPHIC)

Well, that's finally over.  I was petrified since this was my first surgery where I would be put under General Anesthesia.  All went fine.

Because of having the port in the same place, over the past two years, my skin has gotten very sensitive to the solution the nurses use to clean my skin prior to putting the needle in.  My surgeon was concerned about putting the port back in the same place as he felt it was too much of a chance for infection.  So instead of 1 incision.  I had 2 - well technically, 3, but the 3rd one on my neck is not even 1/2 inch.

Now top incision is where my port is.  I have a blood draw Wednesday, then chemo on Thursday, so we will see if it is working properly.

Sorry I haven't posted sooner, Percoset has put a halt to a few things the last few days :) :)

Tuesday, April 12, 2016

Celebrate Life 2016 - an organization in Hawaii, travel across the US spreading how Cancer Patients celebrate life and not death.  They contacted me months ago asking permission to use me in their slideshow. 

This is their 2016 slideshow.  I am at 16 mins and 17 seconds :) <3 :)

From the Mission Positive Films website:
What does a cancer documentary, a Winnebago Scorpion Toy Hauler, seven stray cats, one stray dog, a 35th year anniversary, and a love of hiking all have in common ? 
The answer – The Celebrate Life Tour. 
This begins what should be a very interesting adventure that involves taking a ridiculously large RV, and a ton of animals on a summer trip to Celebrate Life with those touched by cancer.  We will be putting on parties in cities throughout the Northwest, and Canada, bringing together patients, survivors, and caregivers to share stories, information and fun. Amidst the balloons and streamers will be great guest speakers, music, food, giveaways, information on products and services, and a showing of the cancer survivorship documentary ” C – A Celebration of Life “. These Celebrate Life Tour events are free to the public. 
In addition to the Celebrate Life Tour parties, our plan is to share our experiences with those that like stories slightly off the beaten path. Think Lucy and Ricky in an RV, for those of you old enough to remember that. I’ll be posting information about the why’s, how’s, where’s, and what in the world did we get ourselves into. You’ll get acquainted with the ” Scorpion “, laugh as we learn how to maneuver it, meet ” the kids ” ( which is how we refer to our 4 legged companions ), follow the ups and downs of the showings, and hopefully, see photos of some beautiful country on our hikes.
We are not experienced RV’ers, we have not traveled with multiple animals, and this is the first time we’ve attempted these type of events, so trust me, you’ll definitely get some good laughs out of this one.
The Celebrate Life Tour is set to hit the road in July next year, and travel throughout the Northwest through September. We’ll be setting up parties in Portland, Seattle, Vancouver, Calgary, Coeur D’Alene, Missoula, Jackson Hole, Boise, and Bend.

Sunday, April 10, 2016


The information below is published by

Did you know that 65% of patients diagnosed with Lung Cancer ARE NON-SMOKERS?

Finding lung cancer early, when it is easiest to treat, can save lives. Currently, only 15% of lung cancers are diagnosed while the tumor is still in its earliest stages of growth (localized)

One of the challenges for finding lung cancer early is that most people with lung cancers only have symptoms when they are in later stages of disease. Screening for lung cancer means using tests or exams to look for cancer before a person has any symptoms of the disease.
Another challenge has been that conventional chest X-rays often miss early-stage lung cancers.
High-resolution CT scanning, which is much more sensitive, is now recommended for early detection in high-risk individuals.
But many people who develop lung cancer do not fit the high-risk profile, like never-smokers, people under the age of 55, or people who quit smoking a long time ago.
The ultimate goal is to develop a reliable and broadly available test for lung cancer that can catch the disease early even in people not considered high-risk.

Who should be screened for lung cancer?
Guidelines for lung cancer screening have been established by the US Preventive Services Task Force (USPSTF) using the results from the National Lung Screening Trial (NLST).
The recommendations include yearly screening with low-dose CT scans in adults who:
  • Are aged 55 to 80 years and
  • Have a 30 pack-year smoking history (the number of cigarette packs smoked a day multiplied by the number of years a person smoked) and
  • Currently smoke or have quit within the past 15 years
The US Preventive Services Task Force recommends that lung cancer screening stop once a person:
  • Reaches 81 years of age or
  • Has not smoked in 15 years or
  • Develops a health problem that makes him or her unable or not willing to have surgery if lung cancer is diagnosed
How is screening done?

For lung cancer screening today, low-dose spiral (or helical) computed tomography (CT) is used.4 This imaging procedure uses a computer linked to special X-ray equipment to create detailed pictures, or scans, of areas inside the body from different angles. The scans can show both two-dimensional and three-dimensional images of anything abnormal in the chest.  During a CT procedure, the person lies very still on a table, and the table passes slowly through the center of the scanner. With some types of CT scanners, the table stays still and the machine moves around the person. The person might hear whirring sounds during the procedure. At times during a CT procedure, the person will be asked to hold his or her breath to prevent blurring of the images. For lung cancer screening, the procedure usually only takes a few minutes. A CT scan can give very detailed information, including the size, shape, or location of the abnormality. A scan cannot tell you whether that abnormality is cancer or not.

What else should you know about screening?
Although low-dose CT scans are a promising option in lung cancer screening, they do have some drawbacks, including that they:
  • Find many abnormalities that look like small lung nodules (up to 50% of the time) that have to be checked with either another CT scan or a biopsy if considered suspicious. The vast majority of the time these end up not being cancer.
  • Can miss very small cancers or cancers that are hidden behind other structures in the chest.
  • Expose a person to a small amount of radiation. While it is a smaller dose than that from a standard CT scan, it often leads to further CT scans, which in turn results in greater radiation exposure. High doses of radiation exposure can lead to other types of cancer in the future.
Following are some of the factors that should be considered when a person discusses screening with his or her doctor:
  • Screening with low-dose CT scans will not find every lung tumor
  • Not all tumors that are found will be at an early stage
  • A low-dose CT scan may find something that does not end up being cancer
  • Screening can only be done at facilities that have the specific type of CT scan, so a person may have to travel to obtain screening
  • Screening should be done at a facility that has a multidisciplinary group of experts for screening and for the management of lung nodules or other findings
  • Not all insurance companies currently cover CT scan screening for lung cancer, although some states have passed legislation requiring coverage for people at high risk
  • Screening for lung cancer goes hand in hand with smoking cessation. This is a perfect time to reconsider smoking cessation efforts and counseling
The current estimated Medicare reimbursement rate for a non-contrast helical diagnostic CT scan of the lung is $300, but this varies by geographic location

Choosing a screening center
[This section is adapted with permission from Lung Cancer Alliance.]
Ideally, the decision to be screened or not should be made with the help of a person's primary care doctor or pulmonologist. The doctor knows the patient's history and possible risk factors best and can help guide him or her to the right screening center.
Some screening centers require a doctor’s prescription in advance for a scan. Others will do an evaluation, also called a risk assessment, without a prescription to determine whether a person's history and risk factors warrant a scan.
We recommend getting screened at a center that:
  • Provides clear information on the risks and benefits of CT screening
  • Complies with standards based on best published practices for controlling screening quality, radiation dose, and diagnostic procedures. We strongly recommend the protocol developed by the National Comprehensive Cancer Network (NCCN), but at a minimum, the NLST protocol is acceptable.
  • Works with a lung cancer multidisciplinary clinical team, including radiologists, pathologists, pulmonologists, thoracic surgeons, oncologists, radiation oncologists, and nurses, to carry out a coordinated process for screening, follow-up, and treatment when appropriate
  • Includes a comprehensive cessation program for those still smoking or be willing to refer to comprehensive cessation programs
  • Reports results to those screened and their primary care doctors and transmits requested copies in a timely manner
One resource for finding high-quality screening sites is Lung Cancer Alliance’s listing of Screening Centers of Excellence, which Lung Cancer Alliance developed together with a panel of thoracic surgeons, oncologists, and nurse navigators.

Saturday, April 9, 2016

The Joys Of Cancer

First of all, I'm not complaining. I actually find it funny that since my journey started, NOTHING has been normal or per medical protocol.  Sometimes for the worse - Sometimes for the better.

This time, with people poking and picking at my port, all kinds of things are happening.  It appears after 2 years of having this port, I have developed a skin allergy to the solution that they clean my skin with each time before inserting the needle.

Rash, itching, burning and bruising - yuck!  In the very center of the pic is a "black dot."  That is where my port is and the dot is where they put multiple needles in during the past three days.

Now, to the really important question...... My hair is coming back in quite well.  It has always been somewhat straight but it is coming in curly.  It is about 1-1/2 inches long and I NEED to color it - while it's coming back in curly, it's also coming in with ALOT more grey...ugh... Everyone knows I try to see the positive in everyday with this dreaded illness and I decided I want to have fun with coloring my hair.......This is the color of my normal hair - and its a bit shorter....

This is it growing out - it's a bit longer now.
(Caitlyn and I)

So the question is, do I color it dark violet or bright purple?  Yes, I'm serious.  I'm 56, I'm not gonna live forever, so why not have fun...What's your opinion?

Friday, April 8, 2016

April Is Beginning To Get Busy

Well, while getting my Opdivo treatments, it has been quiet around here.  I go every two weeks for bloodwork and my treatment the next day.

Unfortunately, yesterday when I went for my Opdivo, we had major problems accessing my port.  (My port is my central line under my skin which is used for IV's and Blood which is used for bloodwork).  The oncology nurses were not able to draw blood from it, which could mean a multitude of things.  They had to give me an old-fashioned IV for my treatment yesterday - which took 5 sticks before they could find a good vein.  (This really explains my need for a port - my veins are horrible since starting my cancer journey).

Today I went for a Venogram.  It's a type of radiologic test where they inject radioactive dye into the port and watch where it goes.  They determined my port is starting to grow into my chest tissue at the end.  So I have to have it replaced.

Next Thursday, April 14th, I will have surgery to remove the current port and place another in my chest.

This really couldn't have come at a worse time because I was awarded a Travel Grant to attend a nationwide Lung Cancer Summit in Washington, D.C. at the end of the month.  Totally paid for by the organization, Lungevity.

Our National HOPE Summit takes place the first week of May, Lung Cancer HOPE Month.  The goal of the weekend is to provide a summit for survivors with educational sessions covering topics like research, immunotherapy, ask the oncologist, pulmonary rehabilitation, communicating with your caregivers, managing your medical team, living with lung cancer, nutrition, writing and blogging, becoming an empowered advocate, and sharing lung cancer survivor stories.

I remember when I had my first port put in, I wouldn't say it was horrible, but it did hurt for a few days.  So I tried to make sure it is done next week so I have 2 weeks prior to my trip for it to heal and hopefully not be sore anymore.

April 14th just so happens to be my mom's birthday.  She would have been  89 years old if she were still with us.  So I know she will be watching over me that day (and everyday).

The picture above was from yesterday.  I had 3 nurses trying to access my port.  Finally, they wanted to recline my chair flat and when they pushed the headrest down, the headrest went flying to the ground.  I was fine.  But, we couldn't stop laughing.  One nurse screamed because she thought I was hurt.  4 or 5 others were laughing.  The other poor patients had no idea what was going on.

At least I can say I try to have fun at my Chemo!!