Tag Archives: stage IV

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!

Today is World Cancer Day

Did you see the Super Bowl Commercial that Chevrolet ran? They will donate $1 to the American Cancer Society for every person who goes purple on Facebook or Twitter today. Do it, please!!! It will only take a moment of your time and your dollar combined with those of thousands of others can really make a difference. http://www.chevrolet.com/purple-roads-world-cancer-day.html

The Chevy commercial really touched me. This woman is facing a cancer diagnosis … and her husband is sharing in the pain. There are lots of diagnoses that would be heartbreaking to receive. The one I identify with is cancer. I think I will never forget the moment I learned I had lung cancer.

I was fairly certain by that point that I had cancer, though no one but me had ever uttered such a word in connection with the tests I was having. I was so hopeful that it would be nearly any kind of cancer but lung cancer. My dad died of lung cancer only six months of being diagnosed, despite a valiant effort to fight it. The stats for surviving lung cancer are just not good.

Of course, anyone who knows me or who follows this blog knows I didn’t get my wish granted. I not only had lung cancer, I had Stage IV lung cancer that was inoperable. Radiation also wasn’t an option. Chemotherapy was the only hope I was given. And the doctor wasn’t all that confident it would prolong my life appreciably.

How do you describe the emotions you go through when you learn that your life may be nearly over? Just when life was kind of coming together. I was so involved. I had so many more friends and activities to pursue than I had for most of my adult life. I was having fun … no … F-U-N!!! Literally, the time of my life!

Cancer wasn’t in the plans. At all. I had quit smoking five or six years previously. I was physically active. I ate decent. Cancer was for someone else, not me.

Things move quickly after you’re diagnosed with cancer. You face it bravely, but you’re still scared. And once you get that diagnosis, the fact that you have cancer sort of defines who you are from then on. Or, that’s the case with me. It never leaves the forefront of my mind that I have cancer. I don’t mean to say that it especially limits what I do because I try hard to make sure that isn’t the case, but I still never really forget that I am in the fight of my life against a mighty foe. And I never forget that God is Good and He is Powerful. And by His grace, I’m still here and I still feel good and I am still able to do a whole lot of what I was able to do prior to that terrible day that I learned I had lung cancer.

When I watch the commercial, I imagine that the woman has learned recently that she has cancer. Maybe they are on their way to her first treatment or to tell her parents or kids that she’s received a deadly diagnosis. So many difficult moments accompany the news that you have become a cancer statistic. You have to figure out the new road you’re going to walk whether you want to or not … and you wonder just exactly what it is going to entail. Talk about fear of the unknown!!

Is it going to hurt? Will I be deathly ill for my remaining days on this earth? What’s going to happen to my family, to my dogs? Will my friends disappear? Will people be too uncomfortable to be around me? Will I be too uncomfortable to be around them? Will I lose my hair? Will I become a skeleton? What’s it going to be like to face a deadly opponent? What does chemo feel like?

Here are some answers to those questions:

  1. Lung cancer doesn’t hurt. That’s a problem with it. You have no clue you have it until it is so far gone that your chances of survival are greatly diminished.
  2. Some of your friends do fall by the wayside, but others are right there for you every step of the way. You mourn the ones you “lost” and celebrate the ones who are strong enough and care enough to stick around.
  3. I was lucky! My hair got thinner, but I didn’t lose it. I purchased a wig and hats and all of the rest but by God’s grace, I didn’t have to use them. I’m really happy I didn’t lose my hair – that would have been difficult. But it surely wouldn’t have been the end of the world. I see some women who wear their bald heads with such pride … my heart just swells with love when I see it.
  4. I surely didn’t become a skeleton. It never has seemed fair that I can go through chemo treatment after chemo treatment and still be bigger than ever before. But, I’d rather be a little chubby than way too thin. I don’t look sick and I don’t feel sick.
  5. Chemo doesn’t hurt or burn or anything. It is boring … the first treatments I got took 3-4 hours to administer. The ones I get now drip for an hour. Ho-hum. The after-effects can be awful though. I can’t describe the fatigue or the nausea that accompanied my first chemo treatments. I think you have to experience them to understand them. I’ve tried to face this battle with good humor, but I have to say that I was starting to get quite depressed when I was on the first two courses of treatment. You would have chemo, be sick-sick-sick, and finally start to feel better just about the same time as it was time to go again for another treatment.

Every single day when I wake up, I praise God that I’m still here! I still feel good. I can still enjoy the activities I did before I was diagnosed with cancer.

Below is a video that was shot yesterday of my Sheltie, Barney, and I trying our luck at a NADAC Chances run. We did not earn a qualifying score (LOL, to say the least!!!), but we WERE successful! We were outside together with friends and we had a ton of fun. A far cry from the video above where the woman is looking out the window with so many fears and so much sadness.

 

I am fully aware that any day my cancer may take off and kill me quickly. I think that knowledge makes me enjoy each and every day far more than I would if my body hadn’t been invaded by “evil cells.” I try hard not to sweat the small stuff … or even the big stuff.
On the other hand, I tend NOT to make plans for too far into the future. There’s a Gaither concert over the Memorial Day weekend that I would love to attend in Tennessee but I have been hesitant to get tickets … it is a lot of money to spend if it turns out I am no longer able to make a trip like that.
Here’s the thing, though. Tomorrow is not promised to any of us. Car wrecks, heart attacks, the flu … none of us know what tomorrow holds for us. A cancer diagnosis might make that fact a little more real, but ALL of us should live life as if tomorrow may not come. Be happy. Be strong. Live!

Surviving Lung Cancer

I recently had the rather odd opportunity to participate in a market research study that was directed at stage III and IV lung cancer patients. In all, the company was trying to find 9 of us to help them develop a marketing campaign for a new immunotherapy drug that will be coming out. There were three time slots and three people were needed for each time slot. We were paid $200 to participate. If our names were provided to the market research company, the referee received $100. I can only imagine how difficult it must be to locate stage III or IV lung cancer patients; especially patients who are willing and able to participate in the study.

I wasn’t really sure if I wanted to do it either. Sometimes I don’t mind talking and answering questions and sometimes I do. I woke up not sure I wanted to talk about lung cancer or my thoughts about it.

But, since I had agreed to participate, I got ready and made the trip into Dallas. Finally talked myself into trying out LBJ Freeway which has been under construction for the last several years. Wow! It is nice! 🙂

I was very curious to see who the other two participants would be. Would they be sickly? How long had they been sick? I felt certain that I would look far healthier and feel far better than my colleagues. In fact, I was a little smug in my belief that I am doing so much better than most would be a year after being diagnosed with Stage IV lung cancer.

I arrived first. Next, a nice looking lady about my age came in. She sat next to me and we had a wonderful time. She didn’t look unhealthy either. And despite her saying that she is depressed and worries constantly about her diagnosis, she had a fabulous sense of humor. I believe she had been diagnosed about 7 months previously. Her cancer was different than mine and she was able to have a lung removed. Nevertheless, she is currently undergoing chemo that is making her really sick. Ugh. I know the feeling. I referred her to UTSW. Maybe they can get her into a study with a drug like mine that doesn’t make you sick. I hope so.

The last person to arrive was  Lydia. She looked a little worse – she wore a hat, perhaps because she has no hair and perhaps because she prefers a hat. I’m not certain. Looking at her, I assumed she had had the cancer the least amount of time and that she was suffering the most. Wrong. As it turns out, she has been battling the disease for five years. Tumors have popped up all over her body. And the doctors have managed to treat them and get rid of them. Lydia is on a maintenance drug and is doing quite well.

Interestingly, Lydia never smoked a day in her life. When she developed a dry cough, nobody tested her for lung cancer. It took months for a doctor to decide to rule out cancer … and find it instead. Makes you wonder if she’d have been better off if she had smoked previously. At least, if that was the case, the doctors would have nearly immediately tested for lung cancer.

The other lady had smoked, but she quit 23 years previous. Her lung cancer was discovered as a result of her having a skin cancer examined. For some reason, they decided to do a lung x-ray, too. Like me, she had no symptoms whatsoever.

I, too, smoked, but I had quit five or six years before my cancer was discovered. When I agreed to have a CT scan just to be sure I didn’t have cancer, I was certain that I would get a clean report. Wrong!

So … here are some lessons! Lung cancer doesn’t attack only smokers – current or former. It certainly increases the odds of getting it if you do smoke, but that is not a criteria.

Even though the cancer is spreading through your body and advancing to stage III or IV, it is entirely possible that you will have no symptoms at all. By the time you have symptoms, you may well be way too sickly to ever recover. Scary stuff!

The purpose of this blog, though, is not to scare anyone. Rather, it is my hope that it will be encouraging. The statistics say that only 41.2% of people diagnosed with lung cancer survive the first year. Only 26% survive the second year. Scary statistics.

But, of the three of us who were in that room, one has had the cancer for a little less than a year, but it seems likely she will still be living after a year. One of us has beat the odds for over 5 years. And I am well into the second year of my battle. A lung cancer diagnosis is scary, but it is not an automatic death sentence. That’s what I want people to understand and believe.

 

Facts and Statistics – Please Help Support Lung Cancer Research

Lung cancer has a stigma associated with it that most other cancers do not. It seems that people almost think that those who get lung cancer deserve it. The first questions you ask when you hear of that diagnosis are, “Do you smoke? Did you smoke? For how long and how much?” And, if ever in their life the person smoked, subconsciously you think, “Well, you should have known better. You should not have smoked and you would not be sick now.” Probably as a result of this thinking, fundraising for lung cancer lags far behind that of breast cancer and some other cancers.

Below are some facts and statistics about lung cancer. If you ever decide to donate toward cancer research, I hope you will consider earmarking your contribution to lung cancer.

 

  • Lung cancer (both small cell and non-small cell) is the second most common cancer in both men and women
  • Lung cancer accounts for about 14% of all new cancers
  • In 2013, there were 228,190 new cases of lung cancer (118,080 in men; 110,110 in women)
  • In 2013, there were an estimated 159,480 deaths from lung cancer; accounting for about 27% of all cancer deaths
  • Each year, more people die of lung cancer than of colon, breast, and prostate cancers combined
  • Overall, the chance that a man will develop lung cancer in his lifetime is about 1 in 13; for a woman, the risk is about 1 in 16
  • Only 15.6% of people diagnosed with lung cancer will still be alive five years after diagnosis.
http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-key-statistics
http://seer.cancer.gov/faststats/selections.php?#Output