A Day at the Hospital

I decided to do something a little different today when I went for my blood draw, doctor visit, and immunotherapy infusion. I thought it might be interesting to somebody if I documented my visit, from start to finish.

I didn't get every picture I hoped to get. My oncologist didn't see me today so I didn't get a picture of him or his precious nurse (who will be leaving any day to have her baby). My favorite oncology nurses had other patients today so I also didn't get any pictures of nurses in the infusion area. Next time, I hope!

We arrived at the hospital at 12:15. We were supposed to be at the hospital by 12:30. You check in at the main desk and wait to be called.

I didn't look at my watch, but I am certain we didn't wait more than 10 to 15 minutes before I was called back to have my blood drawn. At UTSW, the wait is rarely very long.

Accessing the Port

Right after I began treatments at UTSW, I got a port installed in my chest. You can read all about it at http://mybattlewithlungcancer.blogspot.com/2013/08/got-port.html. Unfortunately for me, I received all of my chemotherapy prior to going to UTSW through an IV in my arm instead of getting a port from the get-go. My veins are shot now. You can't have poison infused into your body through those vessels and expect them to stay supple and healthy.

At any rate, with a port, getting blood is easy-peasy. It takes a special oncology nurse to access the port. Some are better at it than others! But, overall, there is very little pain involved and there is NO searching for a vein or sticking you again and again and again trying to get blood to flow.

At every visit, which in my case is every two weeks, a very comprehensive blood test is done. From three to five tube of blood are drawn and tested prior to visiting with the doctor. If your blood levels are not good, the oncologist may decide to put off chemo or might change the amount of chemo. In my case, there has never been a problem. I am often heard saying that if I didn't have cancer, I would be as healthy as a horse.

There are several nurses who draw blood through a patient's port, but I usually get Grace. We hit it off from the get-go. I love to see her every two weeks and I think the feeling is mutual.

We both have to wear masks while she accesses my port in order to reduce the chance of infection. I hate wearing the mask. My glasses always fog up while I'm trying to talk!

Below, you can see the needle that Grace is going to use to access my port. It is rather large!

It only takes a few minutes to get my port accessed and the blood drawn. Because I really like Grace, we often visit for a few more minutes before I return to the waiting room. You can see all of the tubing attached to the port. When I go for my infusion, it will be administered using this access point. Notice the pink circle on my sweater. Any guess what that is for?

Believe it or not, people were leaving the hospital with their ports still accessed. The pink dot is supposed to alert hospital personnel that my port is still accessed. I personally can't imagine someone leaving the hospital with all of that tubing sticking out of their chest, but that's just me. Chemo brain, perhaps, makes some people forget.

Back in the Lobby

 I don't know why, but this man felt special to me from the beginning. You see all kinds (including crazy kinds like me) at the hospital. This precious man seemed to lack confidence and had something wrong that caused him to shake violently. Another patient offered to open his lunch after he fumbled with it for a few minutes.

As it turns out, I ended up feeling so sorry for the man. It seems his wife is the one with cancer. I don't know if she turned mean after she was diagnosed, if she was having a really awful day, or if she's always been mean. She yelled at the man (loud enough that we could all hear it) for not sitting up straight and then for shaking while eating. Hello?! He obviously had a physical problem that caused the shaking. Now, it is possible that his shaking is worse when she is around. If she was MY wife, her being near would make me shake. Violently.

When they came to get her to take her back to see the doctor, the man still wanted to be supportive. He asked if she wanted him to come along. She rudely told him she didn't care one way or the other. So, he went with them, trailing behind a bit. But, long before they would have reached the doctor's office, he was back in the waiting room. I guess she decided she cared if he came after all and sent him back to us. I didn't, but I just wanted to hug him.

On a happier note, we have had rain here in Dallas day after day after day. I'm not complaining because we needed the rain desperately. Last year, by the end of April, we had received only 3.93" of rain. This year, we had been blessed with 14.67" and so far, it has rained nearly every day during the month of May. It was exciting to see a break in the clouds while we were in the waiting room. We could see bluish skies and even a hint of sunshine!!

I am a people watcher and I tend to make up stories about the people I'm watching.... Well, this guy looked like a thug to me with his shorts down far below his butt. He also had jailhouse-appearing tattoos all over his arms and neck. I HATE seeing men with their pants worn far below their waists. I really think it is out of place at a cancer-treating facility.

I hate the way the guy dressed ... and if I was a betting woman, I would guess he hasn't been out of prison for all that long. I'll give credit where credit is due, though. His children were very well behaved and he seemed to take an active part in their lives. So, I guess pants worn with the waistband closer to the knees than the hips is not a clear indicator of how a person acts.

I did get a kick out of watching him try to walk when they left. His shorts were so low that he couldn't get a decent stride going. Sheesh. Who thinks that look is cute or macho or whatever? Not old fogie me.

People watching makes the time fly by! Soon, an aide comes to get us to take us to the doctor's office.

Doctor's Office

Things at UTSW move along like clockwork. I hear about others who go elsewhere that have to wait and wait and wait. Not so here. It is very, very rare that we don't get in to see the doctor within an hour after the blood is drawn. The reason for the hour wait is that it takes an hour or so for the blood testing to be completed.

I was hoping I would see the doctor today so I could get a picture with him, but I guess he was too busy. I need to quit referring so many people to him! Maybe he'd have more time to see me!! (I am not honestly complaining. I am delighted that more and more of my friends are seeing him because I hope they have the same luck as I have with him treating them.)

On the other hand, I love Sharon. She is very thorough and we have a GREAT time laughing with one another. My visit usually lasts longer than it probably should because we enjoy the time together.

Sharon wasn't quite sure what was going on until after our selfie was taken! You can tell by her beautiful smile that she's a lot of fun. She's also very smart and very dedicated. She'll take as long as you need her to answering questions and addressing concerns.

My blood tests were fine. My CT scan that was done last week showed that my organs are "unremarkable" - a good thing!!! I have no swelling or lumps. The exam doesn't take too long. Since all is well, the immunotherapy I receive can be ordered from the pharmacy. We return to the waiting room one last time.

Waiting Room Again!

In the lobby, there is a giant Chihuly sculpture. When I first saw it, I hated it. I have grown to love it over time. It is very intricate. What do you think? Love or hate or indifferent? Can anyone be indifferent to such a piece?

We now have to wait for a chemo room to become available. And, for the pharmacy to get the drugs ready.

Robert always comes with me to chemo. It is a long boring day, but he never complains. He doesn't have to come, but it sure makes the day go more smoothly having him with me. I have read of so many couples that break up when one is diagnosed with cancer.  I am so happy that our marriage is probably stronger now than ever before. Which says a lot. In August, we celebrate 41 years of wedded bliss!

Infusion Room

It isn't long before we're escorted back one last time. This time, we are going to the infusion room. Where I received chemo, the infusion room was one giant room where everyone getting a treatment sat in chairs side-by-side. As much as I enjoy people watching, I always hated that room. It was such a big, cold, depressing room, just full of cancer patients receiving poison into their veins. Some people got sick, some slept, some visited ... but it just seemed it should have been done in private.

When I switched to UTSW, I was DELIGHTED to find that we would have individual chemo rooms. Each room is a little different. The one we had today was relatively small ... but certainly big enough to be comfortable. There is a television on the wall across from the infusion chair. The infusion chair itself is very comfortable and I usually request a heated blanket when we get to the room. I love those heated blankets!

The chairs for the visitors are not nearly as comfortable as the ones provided for the patient!

An aide always brings us to the infusion room, retrieves the warm blanket and any requested snacks. I am not sure what this aide's name is, but he is my favorite in the chemo area. He is always so cheerful and he's a hard worker. He wasn't the person who brought me to the infusion room today, but he walked by and saw me in the chair. "Hello, Mrs. Fernandez," he said. I asked him if he'd come take a selfie with me and he obliged!

This is the best picture I could get of how the port looks when it has been accessed and readied for an infusion. In the second picture, you can see how all of the tubing is attached. I think I have already said it, but the port makes getting a treatment much, much easier.

My infusion takes one hour. When I was getting chemo, an infusion could take from two to six hours. I like the one hour treatment much more!! So, my treatment began at just minutes after   3  PM. And I become a clock watcher!

YES!!! It is 4:00 ... the treatment should be over! Most of the drug has dripped into my blood stream. Where is the nurse to disconnect me??

What's going on? Where's the nurse? It is now 4:15 and here we still sit! Typically, the nurse appears immediately when the hour of infusion ends. Something must have taken my nurse's attention today because she was late getting to our room.

It isn't too long, though, before she comes in and prepares me for departure. She has to flush the port with herapin, disconnect the port access, give us a parking pass, and send us on our way. We are soon outside and waiting on the valet to bring our car.

You can't really tell from the photos, but the campus at UTSW is amazingly beautiful and serene. One of these days, I am going to take my good camera and spend an afternoon exploring the grounds.

Rewards

Because chemo day is a long day, we nearly always eat a leisurely breakfast before we go and then treat ourselves to a nice dinner afterwards.

Tonight's treat: Dunston's Steak House.

As we drove into the parking lot at the restaurant, we passed this gorgeous cactus. I wonder if it is because of all of the rain we've had that it is blooming like it is? It was so beautiful that I had to stop and take a few pictures before going in to eat.

It smells divine sitting near the wood-burning grills!

Steaks were cooked to perfection and the baked potato was delicious. A perfect ending to the day!

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 really deserve to get it. 

It 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. I had those treatments every 3 weeks for six or seven months. And, that was just the cost of the drug. It didn't include 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 quit 5 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.

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 erroneous 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 for the attendees was calculated, but I would guess it was around 45, maybe even 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 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.

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 don't 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 lot 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 chemo therapies 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.

There are a few groups out there working hard to raise awareness. As awareness is raised, perhaps more big corporations and names will jump on the bandwagon. CVS 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'll 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?

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.



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!!! :)