Category Archives: port

Everyone Needs Support Sometimes

When I was diagnosed with lung cancer, I didn’t know anyone else who was still alive and fighting the disease. I started searching around and ultimately landed on a group where I feel totally at home – it is called WhatNext.

I am going to post two links below that will help you know if you think WhatNext will be a good fit for you. I go to a lot of different lung-cancer related forums, but I spend most of my time on WhatNext. It feels like home to me.

On WhatNext, there are caregivers and loved ones, survivors, and people from the medical field for all kinds of cancer from skin cancer to liver, lung, or lymphoma cancers. Take a look at the information below and please join, if it sounds like a place you’d like to be a part of!

This link tells you a lot of the benefits of the group in an advertising way:  https://www.whatnext.com/ilp/lungcancer/?campaign=AMLC

SandiA is a Stage 4 Melanoma survivor who is active on the site. She tells you why she loves WhatNext so much!

Let me know if you joined the group because you saw this post! I look forward to seeing you! I think you’ll love it there as much as I do!

https://www.whatnext.com/ilp/lungcancer/?campaign=AMLC

Why the Inequities?

You know, I try to stay really upbeat most of the time. I am fairly successful at it. Like Dann Wonser says, most trials and tribulations we lung cancer survivors face are very tiny, while cancer is VERY BIG. (http://www.dannwonser.com/blog/a-little-disaster-can-be-a-good-thing/5/4/2015 … you really HAVE to read this, it is hilarious!). I think many cancer patients agree that we no longer sweat the small stuff … and most everything we face in our lives besides cancer is small stuff.

But, I came across the following article today: http://www.ksat.com/content/pns/ksat/news/2015/05/08/questions-raised-over-funding-for-cancer-research.html. It distressed me a lot. As did most of the reaction I received after I posted on Facebook about it.

The article was written by Myra Arthur, an anchor/reporter for ABC affiliate KSAT-12, a San Antonio, TX affiliate. Ms Arthur questions, as do I, why funding for lung cancer research trails so far behind that of other cancers, especially breast and prostate. Her advocacy makes me wonder if somehow her life, too, hasn’t been touched by lung cancer. Most people ignore it otherwise. That’s just the sad fact.

Facts – Ho Hum … But Necessary!

Here are some facts about cancer – some good, some not so good:

1. The two largest federal agencies that fund cancer research are the National Cancer Institute and the Department of Defense. These two agencies funded breast cancer research at $802 million in 2014. Prostate cancer research received $334 million.

2. Breast cancer is expected to be found in 234,190 men and women in 2015. (That’s right! Men can get breast cancer, too!) During 2015, 40,730 people are expected to die from breast cancer. That’s too many, for sure, but basically, if you get breast cancer, you have very good odds of surviving at least five years. These odds have increased exponentially over the past few years as more and more attention has been given to the disease.

A whopping 29% of all cancers diagnosed will be breast cancer. About 15% of all cancer deaths result from breast cancer.

3. Prostate cancer is the most common cancer among men. It nearly seems like every man is going to be diagnosed with it if they live to be old enough. I have gotten so cavalier about it … “oh! prostate cancer. minor inconvenience. treat it. be done.” I wasn’t quite so sure of myself when one of our very best friends died from it only months after diagnosis. (I think he waited REALLY long before seeking treatment and it had metastasized throughout his body.)

So, the facts for prostate cancer are: 220,800 men are expected to be diagnosed with prostate cancer during 2015. Prostate cancer will account for 9% of all cancer-related deaths this year.

4. And then there’s lung cancer. Research funding from the two major federal agencies for this disease during 2014 was a whopping $265.6 million. Let’s remember. Breast cancer got $802 million and prostate got $334 million. Hello????

During 2015, it is estimated that 115,610 men and 105,590 women (total of 221,200) will be diagnosed with lung cancer. Most of these diagnoses will be late stage because lung cancer typically doesn’t make itself known until it has metastasized. It is somewhat treatable if found in early stages, but in late stages, the prognosis is downright bad.

Lung cancer is expected to claim the lives of 86,380 men (that’s 28% of all cancer deaths) and 71,660 women (26% of all cancer deaths) for a total of 158,040 people succumbing to lung cancer in 2015. An awful lot of families are losing their children, their moms and dads, and/or their grandparents to this insidious disease.

So, the likelihood that you’ll get breast cancer if you are a woman or prostate cancer if you are a man is somewhat greater than that you’ll get lung cancer. Pray that you get one of these cancers and not lung cancer. Because, if you get breast cancer, you have an 89% chance of surviving at least five years. Prostate cancer has even better odds. Over 99% of prostate cancer survivors will still be living life in five years.

But, if you are one of the unlucky ones who gets the lung cancer diagnosis, you have much worse odds. Let’s just take a quote right out of Cancer Facts and Figures 2015, a publication of the American Cancer Society:

 The 1- and 5-year relative survival rates for lung cancer are 44% and 17%, respectively. Only 15% of lung cancers are diagnosed at a localized stage, for which the 5-year survival rate is 54%. More than half (57%) are diagnosed at a distant stage, for which the 1- and 5-year survival is 26% and 4%, respectively. The 5-year survival for small cell lung cancer (6%) is lower than that for non-small cell (21%). 

(http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf)

Wow.

Outrage

So, does this make any sense to you? Because it sure does not make sense to me.  It breaks my heart at the same time as it totally infuriates me.

Did you know that ONE in FIFTEEN will be diagnosed with lung cancer? Those are some pretty scary stats. Most of us have more than 15 people in our circle of family and friends. That means you are very likely to be directly affected by lung cancer. Either because a loved one is diagnosed or because you, yourself, get that news someday. When the word comes that you or your loved one has lung cancer, I wonder if you are going to wish more had been spent on lung cancer research? Because right now, the odds that you will live even one year after lung cancer is found in your body are very, very slim.

There is no stigma associated with getting breast cancer or prostate cancer or colon cancer or, I suppose, any other cancer. But, people, in general, seem to think that people who get lung cancer deserve it. After all, isn’t lung cancer the disease of smokers? People know they are testing fate when they pick up those cigarettes. So, let them just suffer the consequences of their actions, right?

Well … first of all … NO ONE and I do mean NO ONE deserves to get cancer of any kind. It is a fact of life, I guess, that most all of us will be impacted in some way by cancer if we live long enough, but none of us deserve to get it.

Cancer is not a fun disease to treat. People are sick, sick, sick. And often lose their hair. And all of their energy. And their memory.

And, it is certainly not a cheap disease to treat. One … ONE chemo treatment that I had cost over $34,000 and that was after a $22,000 grant was applied. I had those treatments every three weeks for six or seven months. And, that was just the cost of the drug. It didn’t include the doctor, blood tests, or facility usage. Cancer can wipe a family out financially in no time.

But, back to the stigma associated with lung cancer. Did you know that 60 to 65% of all lung cancer survivors (because you become a survivor from the moment you are diagnosed) either have never smoked or are former smokers? In my case, I had broken the addiction five years previously. My cancer is one that both smokers and non-smokers get so there is no clear evidence that my smoking caused my cancer. It is also the same kind of cancer as my dad died from back in the 1970s.

I attended a LUNGevity HOPE Summit in Washington, DC last week. I was amazed at the 150 survivors at that event. One girl was only 20. Her late-stage lung cancer was found (finally) when she was 19. Another beauty was 24. She lost part of a lung to lung cancer. Heart-breaking. Neither girl smoked. Both were gorgeous. Both were physically fit. Both girls had such a difficult time convincing their doctors that there was something more than asthma going on that they didn’t have their cancer discovered until it had metastasized.

Even doctors have an errorenous  image in their heads as to what a lung cancer patient looks like. So, while they are lollygagging along treating symptoms and never even entertaining the idea that there might be something more serious going on, the cancer cells are spreading all over the body.

I met men and women who bicycle hundreds of miles a weekend. Coaches. Vegetarians. Physically fit, well-nourished, non-smokers. Lots of them. Lung cancer survivors, one and all. I don’t know that an average age of attendees was calculated, but I would guess it was around 45, maybe less.

All of this is to say that your mind’s image of a lung cancer patient is probably wrong. He or she is probably as physically fit as you are. And, s/he is probably not as old as you imagined. And definitely likely does not have tobacco stained fingers that are still shakily raising that nasty cigarette up to be smoked. He or she might be your sister or your brother, your mom or your dad, or your best friend. Or you.

The stigma that just won’t go away STINKS. Worse than cigarettes and we all know how bad they stink. And, the stigma is far more deadly than cigarettes.

It is causing doctors to misdiagnose or delay diagnosis until the odds of survival have decreased to almost nothing. It is causing the general public to think it is fine to underfund lung cancer research. It is causing a lot of people to die deaths they do not deserve.

The Good News

The news is BAD when we look at funding, awareness, and the number of people being diagnosed and dying from lung cancer. There really are not a l ot of optimistic things to say about those things.

But, in spite of the limited funding, our scientists and oncologists are making significant progress. This is an exciting time in the research field. They are on the brink of making some discoveries that could change some of those dire statistics.

At the HOPE Summit, we heard from some of the up and coming talents in the world of lung cancer research and they were inspiring. We have targeted therapy drugs coming. Immunotherapies. Perhaps even some chemotherapies that will be less toxic. I can’t imagine the inroads that would or could be made if only lung cancer was given a significant amount of funding like the other two major cancers get.

Tehre are a few groups out there working hard to raise awareness. As awareness is raised, perhaps more big corporations and well-known names will jump on the bandwagon. CVC has recently begun a campaign to raise money for lung cancer. It is the first corporation I know of to begin backing such a campaign. As awareness is raised, there will be more money for research. But, there will also be more lives saved because the image of the old smoker with lung cancer will be replaced by the young vital nonsmoker with lung cancer. People will begin to realize that they are not immune to it just because they never smoked. And then we will have real progress. It is a day I hope I live to see and I have developed a passion for doing what I can to help that day come sooner rather than later.

Won’t you help me?

I just came across another article that I want to share here. It was written by Jamie Gorenberg who wrote for “Desperate Housewives” after her mom, a person who quit smoking 40 years earlier, was diagnosed with lung cancer. I want to share it with anyone who happens to read my blog because she says, more eloquently than I, how it feels to have someone you love diagnosed with lung cancer.

http://www.standup2cancer.org/article_archive/view/lung_cancer_coming_soon_to_a_non_smoker_near_you

 

Port … Still Not Fond of It!

I am still not loving the port! I hope when I go for my next treatment, I will change my mind about how I feel about having this foreign bump under my skin! It is just so ugly!!

I asked Robert to take some pictures of how the port looks seven days after it was inserted (I always want to say “installed” … what’s that say about me??!!) You can see that there is still significant bruising. I called the doctor on Friday because I was still in some amount of pain from the port. Pain may be a bit stretched … but I was certainly aware that something had been done.

Today, Sunday, I don’t think about it constantly but when I sling my purse over my right shoulder, I remember it is there!! 🙂 Hopefully, by the time I have my next treatment – about 1-1/2 weeks from now, it will be sufficiently healed that I won’t be in a lot of pain when they poke through the skin to access the port!

Awake

Well … it is 1:00 in the morning. I have to be at a school at 7 to do who knows what? And, I’m supposed to be there until 4 PM … I have a feeling that won’t happen – especially since I am still wide awake at 1 AM.

I think the place where the port was inserted is healing. I have tried to get a picture of it … it leaves a really ugly bump under my skin. It almost looks like I have grown a third breast. Just what I need! 🙂

It is really weird to have the port. It is hard. And, sometimes, I can feel the catheter in my vein too.

picture copied from https://bit.ly/2HkvHmn

This is what is under my skin and in my vein… I am not loving having it. It is alien. It is ugly. But, everyone tells me I am going to love it when I have treatments. I only have to get stuck once a visit. Blood for labs will be drawn through the port and the drug I am getting will be infused using the port. Since my veins are in pretty rotten shape after being stuck so much over the last 9 months, it will be a good thing to have it, I am sure. I just need to start accepting it better!!

Here is another good thing about it. Because it is inserted completely under the skin, there is no need to try to keep it clean and there are no tubes hanging out… I’m sure it will stop bothering me when the bruising improves and I don’t constantly feel it. I hope so!!!

 

Got the Chemo Port

Robert and I were at UT Southwestern for a long time yesterday. We had to arrive at their St. Paul Hospital by 7 AM so that I could get a port inserted. The chemo and constant pokes and pricks required from frequent blood tests, CT scans, and treatments finally wore my veins out, making the device necessary. Everyone says I will be really happy to have the port.

It was a frustrating morning. We rushed to get there by 7 … it is an hour away from home so we had to leave really early! We waited for 45 minutes to get registered at the hospital. Great! There was only one girl working registration for the entire hospital on a Monday morning. To her credit, she was ultra-patient. I just don’t understand why she didn’t have a whole lot more help. We were behind two people and when we left, there were two or three more waiting. Plus, people kept coming in from the “street” and asking questions, etc. that the girl also had to answer. Because I hate to be late to appointments, I was getting really anxious … and another “a” word … angry!

Once we finally got up to the floor where the little minor day surgery would occur, things started happening. I got an IV so they could give me some medicine to “relax” me during the procedure. Blood was drawn, vitals taken (my blood pressure was lower than it has been in a long, long time … go figure??!!!).

Next, the physician’s assistant came in and introduced herself. The surgeon didn’t insert the port. The PA did. Hmmmm. Hope my insurance wasn’t charged for a surgeon.

The clock was inching toward my 9:00 surgery time and I was anxious to get it over with. But, while things popped when we first arrived, they suddenly slowed to a turtle’s pace. We saw NO ONE from about 8:45 until not 9, not 9:30, not 10!!!!

I already told you how anxious/excited/angry I get when things don’t go like they are scheduled!! I was getting pretty upset because the surgery was going to take an hour and then I had to recuperate for an hour before being released. Well … I was supposed to be over at the Seay building by 1 for my labs, doctor appointment, and treatment. And, we planned to go eat breakfast before we went there since we are usually there for 7 or more hours and I wasn’t able to eat or drink anything from midnight the night before the surgery. I was seeing all of our plans going by the wayside and I was restless and unhappy about it!!!

Finally, at about 10:30, someone came to get me to take me to the operating room. Let me tell you, he was no driver!!! He bumped me into every possible wall from leaving my room until we got to our destination. He said he was going to knock the mean out of me!! (I’m afraid it didn’t work!)

Truly, while I was getting upset, I don’t think most knew it (Robert did). One of the technicians in the operating room – a really sweet English girl with a great accent – mentioned that she heard someone who was jolly was on their way in. Jolly … haven’t heard that word in a long while but appreciated having it used to describe me because I do try to be positive and yes, even jolly, most of the time!

Anyway, while things didn’t go along on the timetable I wanted, the port was inserted (I keep wanting to say “installed!”) with no problems. The medicine they gave me to relax apparently put me all the way to sleep – I was out of it during the actual procedure despite my intent to stay awake so I could write about it!

I got Robert to take some pictures of what it looked like after the surgery. You can see how bruised things already were around the incisions, etc. …

Today, I am sore from the incisions made to insert it. On the other hand, I am enjoying a day at home relaxing – no bath and no driving for 24-48 hours so no work for me!

I tried driving last night when Robert and I went to Subway to grab some dinner. Yeah … I found out why I wasn’t supposed to be driving. The port is installed on my right side. Turning my head to look left or behind me … ouch!!! Nearly impossible at this point!

I’ll post picture of what it all looks like when I can take the bandages off tomorrow. I can’t wait for that!!! The tape is driving me crazy … maybe more than the incisions!!! 🙂