Cancer is nothing when you have hope!! This site is all about living … and living well … with late-stage cancer. I hope you will journey along with me through the ups and downs of living with lung cancer.
My six-year cancerversary is upon us so I guess it has me thinking about the journey I’ve been on. I might have chemo brain that robs many of my memories, but I surely remember hearing the words, “You have cancer.”
Cancer … But What Kind?
While I already suspected that I was getting a cancer diagnosis because my primary care doctor (PCP) had ordered a PET scan, I didn’t know what kind of cancer. I was hoping against all hope that it was going to be thyroid cancer. After all, it was weight gain that had sent me to see her in the first place. It would make some sense that my thyroid had a malignancy.
While I waited for my diagnosis, I reasoned that we could just go in, take out the offending thyroid, prescribe some pills to replace the missing hormone, and all would be well. Cancer gone. Life restored. Carry on.
I hoped against all hope that I wasn’t going to hear that I had lung cancer. I had no reason to think that would be the case. I had quit smoking years before, I was more active than I’d ever been, I felt great. Really, the only problem I had was the unexplained and seemingly uncontrollable weight gain. Surely, I wasn’t going to be told I had lung cancer.
My husband and I had just pulled up into the parking lot of an Asian barbeque restaurant when my PCP called me to finally tell me the results of the PET scan. My husband and I had been waiting not so patiently to learn the results of the scan I had undergone about a week earlier. So, I was happy … and scared … when my doctor’s name showed up on the caller ID.
The call didn’t last very long. My doctor told me that I had lung cancer. My heart sank like a ton of bricks. I had watched my dad die of lung cancer back in the 1970s. I knew enough to realize this was not a diagnosis anyone wants to hear. There was a (very) tiny sense of relief when she told me it was non-small cell lung cancer. I’d read that small cell was even more difficult to treat than non-small cell.
My husband was sitting in the driver’s seat of his truck, looking at me with questions in his eyes. Whatever my diagnosis was, it would affect many more lives than just mine, especially his. I wrote “lung cancer” on a scrap of paper and showed it to him.
I remember my doctor telling me that she’d set me up with an appointment the following day to see an oncologist. I was so grateful that (1) she had handled finding me a cancer doctor and (2) that I wasn’t going to have to wait except overnight to go see him.
Keeping Up Appearances
After I hung up, my husband and I sat in his truck and discussed the call for a couple of minutes. I shed a few tears. Then, we went inside to eat so that I could get back to work. I was really happy the call had come while I was away from the office. Processing the news away from prying eyes was definitely easier.
I remember sitting at that small table in the crowded restaurant, looking around, and wondering what secrets the other patrons had that no one else knew. Outwardly, no one would suspect that I had just taken a call that shattered my world. It was surreal to be sitting there, eating a meal as if we had not a care in the world.
And, So It Began…
And, so began the journey that has taken me to places I would have never guessed I would go. What an adventure it has been.
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!
Robert went for a physical yesterday. He saw the doctor who first discovered my cancer, Dr. Donna Casey. I went along, partly because i wanted to hear what was said about his health and partly because I wanted to see Dr Casey again. The last time i had seen her, i had just been told i needed to get into a clinical trial because traditional treatments were not working any longer. That was in July 2013.
I worried a bit about whether she would remember me or not. It had been over a year and a half since i had seen her. I count her my angel doctor, but she sees many, many patients every week. There was not as much incentive for her to remember me as for me to remember her. I will never forget her! And will forever be in her debt!
Dr. Casey walked into the room, spoke to Robert, and then turned to introduce herself to me. When she saw who was sitting there, she broke into such a big smile. She was so excited. “I know YOU,” she exclaimed.
She started asking a volley of questions and then remembered that Robert was the patient this time, not me. She asked him if he cares if she spent just a few minutes catching up with me before getting to business with him.
While we discussed my treatments and how well they were going, she had to reach for a tissue. She was so overwhelmed with joy that big alligator tears had formed in her eyes. She kept assuring us that she was crying happy tears. Of that, there was no doubt.
I have always requested for her to receive copies of my CT scans, which happen every six weeks. I often wondered if she (or her office staff) considered them irrelevant. it is a lot of paperwork to keep up with for a patient you rarely see. I was shocked and humbled when she said she reads every report. From her conversation, it was apparent that she does!
All of this might not be so hard to believe if Dr. Casey had treated me for years prior to her discovering the knot on my collarbone that set the whole fight against stage IV cancer in motion. But, that isn’t the case at all. She discovered that knot on my very first visit.
Immediately, she scheduled me for CT scans … that day. I heard from her just a few days later, with the information that there could be a problem and that her office was going to work with my insurance company to verify that they would pay for a PET scan.
I felt great. I went to see Dr. Casey at the very end of October 2012 primarily because i hadn’t been to the doctor for about 10 years for a physical. The main thing that drove me was weight gain. I kept packing on pounds and couldn’t lose them after going through menopause and quitting smoking at about the same time. I assumed i had thyroid issues. I never, ever dreamt that i had cancer issues!
I had never heard of a PET scan so i immediately got on Google to see exactly what kind of scan it was. That was my first hint that i might have some kind of cancer. PET scans are used to diagnose cancer cell activity, heart disease, and dementia. I was confident i didn’t have problems with the latter two.
Dr. Casey’s office made the appointment for the PET scan as soon as approval for the test was received. She is amazing in her ability to get things done, so we didn’t have to wait long for the appointment.
By now, i surmised i had some kind of cancer. Since i had watched my dad die very quickly from lung cancer, i was praying it was any kind but lung cancer.
The only time we ever had to wait for what seemed like a lot of time to get a response from Dr. Casey was to hear what the results of the PET scan were. It took a week or so before we got the call that I had cancer … lung cancer. It was a call she hated to make, but she had already done everything for me. We had an appointment with an oncologist the very next morning.
Dr. Casey asked us to come by her office to report after the visit to the oncologist, Dr. Lalan Wilfong. He reported that the cancer was extensive. Because of its location, it was inoperable and radiation wasn’t an option either. Chemo was my only hope. He ordered a biopsy so we would know exactly what kind of lung cancer we were fighting.
By this point in time, we were nearing the Thanksgiving holidays. The date for the biopsy was set for after the holidays. Dr. Casey asked usmif we couldn’t have the biopsy done that day, rather than waiting. “Well, sure, but can we get in to have it done?” It was already nearing noon and, if memory serves me, it was Wednesday before Thanksgiving.
The amazing Dr. Casey pulled her magic strings and in just a few minutes, we were headed to Presbyterian Hospital to get a biopsy. There was never a moment to sit and worry. She was about action and we were so grateful.
Because she made things happen so quickly, it was only barely over a month between the time i had my first appointment with Dr. Casey and when i was in the chemo room getting my first chemo treatment on December 5, 2012.
By May or June 2013, i had reached the end of the road for traditional chemo. The tumors responded as long as the poison was infused into my veins. But, as soon as treatments ended, the tumors took off again. Dr. Wilfong told us that there was another chemo drug we could try , but he wasn’t optimistic about it. It didn’t work as well and it made patients sicker than the previous drugs i had received. The idea didn’t appeal to me at all.
He recommended that i consider getting into a clinical trial at the Mary Crowley Center. I had never heard of that organization, but was willing to see what it offered. However, i was really hoping to go to UTSW. I had heard good things about them.
When Mary Crowley was not at all responsive, we went back to see my angel doctor, Dr. Casey. We told her what was going on (or not) with Mary Crowley and asked what she thought about us going to UTSW. In minutes, she had called Dr. David Gerber and set us up an appointment.
The rest is history. I signed up to participate in an immunotherapy trial. My first treatment was in July 2013. The results have been awesome. I am the only patient still on the trial, at least at UTSW, but it is working great for me. My tumors have sat stable since i started the trial. Sometimes, the radiologist classifies them as scars, though Dr Gerber scoffs at that. He said there’s no way to tell from a CT scan.
As long as they sit dormant, i am okay with them being there. I wish they would go away entirely, but this is the next best thing!
And, for all of this, i owe Dr. Donna Casey. She is my angel, if ever there was one!
So … I am one of those people who do not go to the doctor. Ever. It just isn’t something I’m willing to do. For any reason.
But, one fateful day in October 2012, I decided it was time to go for a physical. Why? Because I kept getting bigger and bigger and I was just certain that I had thyroid issues. I am very active – I have two wonderful dogs (you’ll hear lots more about them!) that I do agility with. I was in class three nights a week and most weekends would find me at agility trials where I not only ran my dogs, but also worked in the rings throughout the day. Nevertheless, my stomach grew and grew and grew and I finally was fed up with it. So, I found a doctor that took my insurance and waited for a new patient appointment to become available.
I chose my doctor based on her name — Dr. Donna Casey — because she (1) had a good ranking with Blue Cross-Blue Shield, (2) took my ChampVA insurance, and (3) shared the same name as a friend with whom I worked. Best decision I have made in a long, long time was making an appointment with Dr. Casey.
When I arrived at her office at the end of October, she asked some questions and then did an exam. I nearly forgot to mention a knot I had found on my collarbone … but she had discovered it already anyway. Since I was a former smoker, she had already asked me if I wanted to have lung x-rays. Since I had quit 4-5 years previously, I thought it might be a good idea to see how much damage I had done over the years. After she discovered several knots around my collarbone, she suggested a CT scan might be in order. Her office made an appointment for me to have the scans that same day.
The scans were not clear like I expected them to be. When Dr. Casey called, she said they showed that I have emphysema, which for some reason really didn’t bother me much, and that there was some other activity that we needed to look at further. Believe it or not, I was far more concerned with what my thyroid test said – I was still far more concerned about the weight gain than errant cell activity. That changed some when the doctor started talking about having biopsies or a PET scan. I had no earthly idea what a PET scan was, but a little research revealed that a positron emission tomography is a test that is primarily used to diagnose (1) heart disease, (2) dementia, (3) epilepsy, or (4) cancer.
It didn’t take a rocket scientist to deduce that Dr. Casey was worried that I had some form of cancer. If you can hope for a kind of cancer, I hoped it would be some sort of lymphoma. What I absolutely didn’t want it to be was lung cancer – especially since my dad died from lung cancer at only 49 years of age back in the mid-70’s. But, we don’t always get what we want.
After the PET scan was done and interpreted, Dr. Casey called with the the bad news. I had lung cancer. She had already made me an appointment with an oncologist for the next day.
It was Dr. Lalan Wilfong at Texas Oncology who got to tell me and my husband Robert that I had stage 4 lung cancer. There was a spot in the left lung, a great deal of involvement of lymph nodes in the lungs, and tumors in the lymph nodes at my collarbone on the right side. It is inoperable. And, there is too much involvement for radiation. Our only option: chemotherapy.
Things moved quickly once the cancer was diagnosed. It is a fast-moving cancer so the quicker chemo could begin, the quicker we could try to halt its progress. The average lifespan for people with this lung cancer is only 1-1/2 years. I’m only 59 years old and I have a lot of living I still plan to do so I surely do hope to beat those terrible odds.
I pranced into chemo for the first time – ready to go! Let’s get “lit up” and start fighting back against this insidious, but oh-so-silent, disease. It took most of the day by the time we visited with the doctor, got insurance straight, and got the actual chemo. (It may mean something to some people to know which drugs I am getting: carboplatin, pemetrexed, and avastin. The chemo nurse told me they were the latest, the best, and very expensive. I have no idea!) We did a short video of me getting ready to start the chemo. I was going to do a documentary. Maybe I still can via this blog.
My 82-year-old mom and my husband Robert accompanied me to my treatment. Mom sat through the whole thing. Robert doesn’t sit well so he comes and goes throughout the experience. The infusion room was an interesting place – there were all ages of people sitting in the chairs getting chemo. Some people had hair; some didn’t. Some used ports and others, like me, got their treatments intravenously. Surprisingly, the vast majority of people receiving chemo were women. What’s up with that?
It was fairly unremarkable to receive chemo. I didn’t feel good or bad during the infusion. I felt just fine when it was over. There is really no need for me to have accompaniment – other than it makes those who sit with you feel better that you’re not alone. I’m such a loner that it honestly wouldn’t bother me to sit there and play on my tablet or phone or just rest, but that’s not how it is going to be.
Not really, but you would think so based on my appetite since I have started chemo. I don’t want soup or bland foods. Oh no!! I want Mexican food or chicken fried steak or roast beef and mashed potatoes. And, whatever it is that my mind gleans on that day, I nearly obsess over it! My poor husband has been such a trouper as we go from one thing to the next, satisfying my latest cravings. Yeah, I’m not losing much weight as I undergo chemo. That belly is still at least as large as it was before. That makes me sad.
Well, the day of chemo and the first day thereafter, I felt just fine. I popped up out of bed on the day after, walked my dogs like I always do and got ready and went to work. I was full of pep and energy until around noon. At that time, fatigue set in. I left the office a little early and came home. I had really hoped to go to agility practice that night, but I was way too tired for that.
I missed the next couple of days at work (Thursday and Friday). I was in bed the entire time. No eating. No drinking. Just sleeping. With my Sheltie, my Barney boy, cuddled right up beside me the entire time. I loved having him lay right up against my body. It was like I could nearly feel the heat of his body pulling cancer out of me. Of course, there’s me… Worrying that if his body is pulling the cancer out of me, I sure hope it is not pulling it INTO him! That would never do.
Try as I might, I just couldn’t get to agility practice that first week after chemo. I had the desire, but I sure did not have the get-up-and-go needed. But, when I got up on Saturday morning, I was determined to go to class. I did not feel good enough to go, but I got dressed and off we went. Robert went too, in case I couldn’t drive home.
It took everything I had to run those courses that day, but Barney and Cotton each got a couple of runs around the agility field. It was as exhilarating as it was exhausting. If you haven’t had chemo, there is no way to understand the fatigue that sets in. I could literally barely drag myself and Cotton and Barney to the car after I threw in the towel on practice.
Robert drove us home. We nearly made it home before I got sick, but he had to pull over and let me throw up. We got home and I had diarrhea. But, after that, I felt good again.
The next couple of weeks went fine. Unless I overdid it at work. Which I was sometimes prone to do. One Friday I so overworked my tired body that I was nearly dead in my tracks. Robert and I went to eat in Rockwall and I could barely make myself eat. Still, I drove home. And fell asleep while waiting on a turn arrow. Thank goodness Robert was in the car with me and could wake me up! I was really only dozing, but it wouldn’t have taken much for me to go into a full-fledged sleep right there in the turn lane! That’s tired!
Since it was December, a lot of our agility classes were canceled due to the holidays. We managed to make a couple of Saturday DAWG classes and one Thursday class at Dallas Dog Sports. The dogs and I had a blast at all of the classes – I do love agility! And so do they! It is great exercise and such a fun way to play with my beloved dogs. And, the people – you just won’t meet finer.
My attitude has remained positive. I am not really afraid. I usually don’t feel like it isn’t fair that I have cancer. (Who smoked? Me! Not that I think I deserve to be sick, but I guess my attitude is more like, “Why not me?”) Sometimes when everyone starts talking about their trial results and I have been too ill or tired to go, I am sad that I didn’t get to go play with my dogs and friends, too. The competitive side of me hates to see us fall behind in earning those qualifying scores and titles. But really? If that’s all life is, I think I may need to be re-examining my values a bit.
Being diagnosed with cancer brings some interesting insights into who your friends are. People who you thought were your good friends and that you would have done (and did) a lot for are not necessarily those that are there for you. And, then there are those that you liked but didn’t consider close friends who are more than there for you – who are willing to do anything and everything for you. Sort of makes you pause and say a little prayer of gratitude – for the insight and for the wonderful, wonderful friends who are there for you not just when you can do for them, but when you can’t. Those who remember you even if you are not physically where they are. Those who understand that it is hard NOT to be able to do the same things as they enjoy when you, too, enjoy it so much. Yep, I’m getting a bit maudlin so I believe we will move on from here!!! Wallowing in self-pity is ugly, no matter who is doing it. I have no patience for it – from myself or anyone else.
I have actually worked at maintaining a bright and cheerful attitude and I don’t dwell on being sick or require (or ask) that anyone else feels sorry for me. What I want to is to still be able to laugh and have a great time and for no one to feel uncomfortable around me because I have cancer and I may be dying.
Truthfully, we’re all dying with every breath we take. Some of us may have fewer breaths to take. If that’s me – well, I want the breaths I have to count!!!! I want to have fun and enjoy what life has to offer. Otherwise, why bother to go on living?
On the other hand, I do expect that people show a little respect for my weakened condition. The chemo makes me very susceptible to disease. If you are sick, please do not knowingly share my breathing space. You feel bad when you are fighting an infection or the flu; I could end up in the hospital or worse if I catch it. If you know you are going to be somewhere that I was planning to go, just let me know you are not feeling well, but are going to be wherever. I can and will stay home so that you can keep your plans.
Off of that soapbox and back to my surprising friends. Some of my friends have just been remarkable and deserve special recognition. It is scary to start recognizing people because inevitably, I will leave someone out and the very last thing I would ever want to do is hurt anyone’s feelings. Because I appreciate the friends who have offered to do things and been rebuffed by me and the friends who post little “I’m thinking about you” or “You are in my prayers” comments on Facebook. Those reminders that people care mean all of the world to me. So, so special. Sally from work just can’t do enough. She brings us food, food, food and so much love and concern. Sally and another friend from work, Cindy, are my chemo angels. They bought me a wonderful bag, pjs that I wear every night, socks, lotions, lip creams, the list goes on and on and on.
My friend Ann too has been there for me. Getting up early to walk with me so I don’t have to walk by myself, bringing me good food to eat, willing to do anything and everything.
Charlene brought me a warm, cozy jacket, socks, a blanket – so many things – even goodies for the dogs – wow! Just so much thoughtfulness. I often wonder if I would be so generous and thoughtful if it was them instead of me. It causes me to really think and reflect on that because I now know personally just how much small gestures mean – even a relatively simple “how are you doing” post on Facebook.
Get Well from Run As One Agility
Last but far from least – I just have to recognize Ed and Run as One Agility. I was signed up to do an agility trial but had to cancel because I was just not in good enough shape to go after chemo. Ed took a picture of me and my dogs and had everyone at the trial sign it. Framed it and brought it all the way over to me. It hangs in an honored spot in my house. I hadn’t cried much over my diagnosis (then or since), but I certainly did cry when I opened the package. Wow. I’ll have to get a picture of it posted here.
And, then there are my agility friends who will be with me on Sunday, Jan 6, at the Run as One trial. Some of them signed up for the first time ever for a NADAC trial so that they could be there to support Run as One since they supported me and to be there with me. What can you say??? What can I say? It is overwhelming and so very special.
The three weeks between chemo treatments dragged in some ways but sped by in others. In some ways, you want to keep those chemicals flowing in your body. The cancer is pretty rampant in my body and if the chemo can stop it in its tracks, then lets keep the chemicals there!!! On the other hand, it is just about the time that you start feeling pretty good for a good portion of the day that the time to “get lit up” returns.
I’d been told that every successive treatment is worse – the impact is cumulative. That makes sense. Each treatment takes you down more and more. Knowing how I felt during the worst times after Chemo #1 surely does not make me look forward to experiencing that again, but on a grander scale. I was upbeat, but not quite so bouncy when I returned to Texas Oncology on December 27 for my second treatment.
I had blood tests and a brief visit with Dr. Wilfong before going back to the infusion room. My blood tests came back great. It is so ironic that I am so extremely healthy except that I have this terrible disease that wants to kill me off sooner rather than later. My blood pressure is fine. My blood sugars are great. The only pills I take are folic acid (for some reason it is needed due to the chemo) and Vitamin D3 pills. I give myself a monthly B-12 shot. My first-ever mammogram came back completely clear; the first pap test in over 10 years was clear … I am very nearly the picture of health.
I had been monitoring the tumors on my neck and felt like they were smaller. Yeah, so small that I could no longer feel them! But, sometimes hope can play tricks on you so I wasn’t counting on the accuracy of my self-exams.
Great news! Dr. Wilfong couldn’t feel those tumors either! In fact, the first chemo treatment shrank them to the point that they cannot be felt. Maybe they are gone altogether. I sure do hope so! Even more, I hope that those masses of tumors in the lymph nodes in my lungs have responded in kind. Now THAT would be the absolute best news I have had in a long, long time.
So, knowing that the chemotherapy is working, I returned to the infusion room with Mom and Robert and lots of other women (and only a few men again). I had a great chemo nurse this time – I wasn’t fond of the first one. Neither of them have been all that forthcoming, but at least this one was friendlier and she definitely knew how to get an IV going without hurting you.
My chemo nurse commented on how soft my skin is. I have extremely dry skin and use lots of lotion. If you want some of the best skin cream around, you can make it yourself for a very low price. It works! Go to the local Family Dollar store and buy their brand of baby lotion, Vitamin E cream, and petroleum jelly. Mix it all together and slather it on after showers or whenever. Despite having the petroleum jelly in it, it is not greasy. (Here’s the recipe.)
After the chemo treatment was complete, Mom, Robert and I went to eat at El Fenix and then Robert and I came on home. As with the first treatment, I felt fine the remainder of the day and was okay on the next day as well. Even on the third day I managed to vacuum all of the downstairs and do a little bit of dusting (not nearly enough). I didn’t deep clean by any stretch of the imagination, but the fact that I could clean at all was remarkable to me (especially when you consider how much I hate to clean house).
But, the end arrived for feeling fine. The next couple of days were terrible.
Barney, the great comforter
I was so nauseated. The nausea pills didn’t work at all so I quit taking them. I didn’t want to eat or drink. I could drink ginger ale but nothing else. And it wouldn’t necessarily stay down. I stayed on the loveseat with my precious Barney right with me – usually on top of me.
I felt dehydrated but the thought of drinking anything made me queasy. I could eat on occasion… One friend posted on Facebook how she was going to have tomato soup and grilled cheese – comfort food – that’s what I fixed for myself too. Doesn’t necessarily sound like food for a queasy stomach, but it tasted good!
I kept a pot right beside me so that I didn’t have to try to make it to the bathroom or kitchen. I hate being sick. H-A-T-E it! I start wondering if this is really worth it. Being this sick is just no fun at all.
And then one day, not so many days later, you wake up and you’re back among the living! It feels so good to feel good again!!! You’re so glad that you feel good again that your first inclination is to overdo it. Which sets you back ever so slightly. It has been great having chemo during Christmas vacation – I haven’t had to worry about calling in sick or anything. On the other hand, I hate that my entire Christmas vacation has been nearly “wasted” with trying to feel better. Sometimes, I guess you just can’t make me happy!!! 🙂 I know I am dreading the holidays drawing to an end. But that is not something new. Even when I wasn’t sick, I dreaded giving up my free time and returning to work.
So, here it is, Thursday – one week since I had my last treatment. I feel pretty good, though I did take a long nap today and haven’t exerted myself much (at all). I was wishing we had agility class tonight but I don’t think we do. I sure do plan to be at class on Saturday. And, on Sunday, Cotton and Barney and I get to go to Terrell to play agility at the Run as One NADAC trial. I am so excited!! I signed up for 7 runs and I sincerely doubt that I’ll be up to that many runs. I imagine that I’ll be too slow to make time – NADAC times are very fast – but I bet I have a blast. It has been over a month since I have been to a trial. I hope I can do it!
This catches us up. I’m going to try to keep this updated on a fairly regular basis. Even if no one reads it, it will be a great journal for me! I’ll try to make it more interesting with more pictures and stuff when I start updating it regularly.