Mutation testing is a subject near and dear to my heart. I can’t say how many people I have met who have lung cancer but know nothing about genetic testing. As a matter of fact, not so long ago, I didn’t know much about it either. (And, to tell you the truth, I’m still far from an expert. But, I know enough to tell you that the testing is very important and it can be a life or death test.)
So, What is Mutation Testing?
Mutation testing has a bunch of different names: molecular profiling, molecular tumor testing, biomarker testing, genomic testing, testing for gene mutations, genetic testing, genetic mutation testing, and more. It can be very confusing, for sure. But, here’s what you need to know – if you have lung cancer, especially nonsmall cell lung cancer (NSCLC), you are doing yourself a big favor if you ask your oncologist to get mutation testing, by whatever name, done.
Why is mutation testing important? Our cancer is unique to us. Each tumor cell is made up of specific proteins and molecules. According to American Cancer Society, normal cells do not have mutations, cancer cells do. Genetic testing allows doctors (pathologists) to take a detailed look at tissue from your tumor to see what mutations exist in its DNA and exactly what proteins are present.
How is Mutation Testing Done? Does It Hurt?
No. Or, it doesn’t hurt if you have tissue available from your previous biopsy. The pathologist will just use some of that tissue to do further tests.
If you do not have enough tissue left from your biopsy or the tissue is old, it will be necessary to get more tissue. Depending on where the tumors are located, the procedure could be simple or a bit more involved. I had a tumor on my supraclavicle lymph node (collarbone) so it was very simple to take tissue from it for further testing.
Why is It Important to Have My Tumor Tested?
Your tumor was already tested to a certain degree. The pathologist took the tissue from your biopsy and used it to determine what kind of cancer you have. If you have nonsmall cell lung cancer (NSCLC), then the pathologist looks at the tumor a little closer to determine what subtype it is. Generally, you will learn that you have adenocarcinoma (about 40% of NSCLC cases) or squamous cell (epidermoid) carcinoma (25-30% of NSCLC cases), but you may have one of the less common types, large cell (undifferentiated) carcinoma, adenosquamous carcinoma, sarcomatoid carcinoma, etc..
Your oncologist uses the information from the pathologist to determine a treatment plan that will be the most effective against your tumor type. Recently, it has become more affordable to provide the oncologist with even more information about your tumor type so that he can hone your treatment plan further.
Depending on the characteristics the pathologist finds in your tumor, your oncologist may decide that there are targeted therapies or immunotherapies that likely will be most effective against your tumor(s). In (very) simple terms, targeted therapies attack just your tumors, instead of all of your cells like chemotherapy does. Immunotherapy works with your own immune system so that it can see and destroy the cancer cells.
According to Memorial Sloan Kettering Cancer Center, about 60% of adenocarcinoma lung cancers will have specific mutations. Many of these mutations may have targeted therapies or immunotherapies available to treat them.
Among the most common mutations for which there are targeted therapies are Epidermal Growth Factor Receptor (EGFR), Anaplastic Lymphoma Kinase (ALK), ROS1, and T790. Scientists are discovering more and more mutations every day and finding treatments that work effectively against them. Immunotherapy works best when there is a large amount of a protein called PD-L1 in your tumor.
I’ll take this time to make a brief plug: more, more, MORE money is needed for lung cancer research. We’re talking lives here!!!!
You guys!!! This girl just passed her FIVE YEAR cancerversary!!!
When I was diagnosed back in 2012, my first oncologist thought I might live four months. And, yet I recently celebrated FIVE years of life after diagnosis!!!
|Donna, December 20, 2017|
The year 2017 was an eventful one for me. After four years of immunotherapy treatments with every CT scan showing tumor stability, a tumor in my supraclavicle lymph node (on my neck, near my collarbone) outsmarted the drug and began to grow.
I had to quit my clinical trial after treatment #98. I was so looking forward to getting my centennial treatment. I wonder how many people in the world have received 100 infusions of nivolumab (aka, Opdivo)? I wanted to be among the first.
There were decisions to be made after we got that fateful CT scan back. Initially, I was going to just move into another clinical trial. But, by the time I completed all of the requirements (ie., a biopsy to see how much PDL-1 was present), someone else got the spot I was hoping to fill.
My oncologist suggested that I go on chemotherapy for a time while we waited on something better to come along. I had done chemotherapy. I wasn’t anxious to do it again. To say the least.
I pondered on the idea for several days. I cried … and I rarely cry. I started getting depressed … and I am rarely depressed. I thought, I prayed, I researched other options, including potential clinical trials available in Dallas or Houston or anywhere within driving range.
And, one day I decided radiation might be a viable option. The tumors in my lungs were still stable. Only the one tumor in my neck was growing. It seemed to me that it would be an easy thing to radiate that bugger. (I wasn’t a candidate for radiation when I was first diagnosed because of the location of my tumors in my lungs.)
I spoke to my nurse practitioner about the idea. She said if I really thought that was the route I wanted to go, she would make a referral to a radiation oncologist.
|My radiation mask and a wonderful
cross my cousin sent me.
My husband and I had an immediate connection with the radiation oncologist. We liked him a lot. And, we completely trusted that he would get the job done on that errant tumor, that I had nicknamed Wayward Tumor.
I had fifteen treatments. I will be blogging about those treatments if I will ever sit down and finish them. The treatments were easy enough. I was a little surprised by the severe fatigue that came around after the treatments were complete. It has taken several months to begin to regain my energy and even so, I tire and stay tired very easily.
Nevertheless, when I had my first CT scans since the discovery of the growing tumor, we got great news! Not only was the tumor in the supraclavicle lymph node gone … yes, for the first time in five years, that baby was no more!!!! … the one tumor in my lungs that the radiologist doesn’t call a scar shrank by half. That tumor had been completely stable for over 4 years, not shrinking or growing, just being.
I have been okay with those results … I’ve often said I was completely willing to carry the tumors around with me as I live my life as long as they just sit there nicely and don’t interfere. So, I wasn’t prepared to hear that it had shrunk significantly. Wow!!! You gotta love a CT scan like that one!!!
We didn’t do anything special to celebrate my five-year cancerversary. In a lot of ways, it was just another day. But, in my mind, crossing that magical line in the sand – it seems many stats are done for one year and five-year survival rates – was special. Very special.
I am well aware that people can and do get to fight the beast again after crossing the five-year mark. The fact is, I am still in active treatment. I have been in active treatment for the entire five years that I have known I had lung cancer. But, it is still celebration-worthy to cross a milestone that has been looming in front of me all of this time.
Next milestone in sight? 10 years, of course!!!!
Lung cancer is a bitch, y’all. It just is. But, it isn’t stronger than we are. If we keep a smile on our face, a song in our heart, and let hope consume us … we beat it. Every moment we do not dwell on cancer, we beat it. I am resolved to be happy and content every day that is before me. In that way, no matter what happens, I have beaten the beast.
|Merry Christmas, Y’all.|
I am often asked for my story. I thought I might write it out and post it here. It will be easier to find and then copy and paste elsewhere when needed.
Finding the Cancer
When my Stage IV lung cancer was discovered in October 2012, I was, as far as I knew, as healthy as I have ever been in my life. I was playing agility with my two dogs three or four nights a week and every weekend. For those who do not know, agility takes a lot of stamina and energy! (https://www.youtube.com/watch?v=OCFrUCu6F_g)
I went to the doctor because I kept gaining weight. No matter what I did, I couldn’t lose it. Since I had always been tall and thin, the extra weight was disturbing me. I self-diagnosed thyroid issues.
I am not a doctor goer. When I went to the doctor on that fateful October day, it was the first time I had been in 10 or more years. I chose the doctor based on her name – I knew someone else who had the same name – and the fact that she took my insurance. This was the luckiest choice I could have ever made.
The doctor felt a very, very small knot on my collarbone. She sent me for a CT scan. That day.
She called in a few days to tell me that my thyroid was fine, but I had some strange cell activity in my lungs. I needed a PET scan, she said.
I had never heard of a PET scan. When we got off of the phone, I immediately began to research. And, what I found was scary. PET scans are used to determine malignant activity. Cancer????? Me????? But, I was as healthy as I had ever been.
Sure enough, I was diagnosed with cancer. Specifically, I was told I had Stage IV adenocarcinoma of the lungs that was both inoperable and could not be radiated. Chemotherapy was my only option.
I had watched my father die of lung cancer back when I was in my early 20s. His cancer was also discovered by accident, during a routine physical required by his place of employment. Six months later, at barely 49, my dad died. He went through hell during those six months after diagnosis, suffering through chemo and radiation. I had always said chemotherapy was something I would never, ever do.
Until it was my only choice.
I began chemo – a cocktail of Avastin, Alimta, and carboplatin – in early December 2012. I was one of those people who had a difficult time. No matter what nausea medicine we tried, I was incredibly sick the first week after an infusion. Fortunately, my health improved by leaps and bounds during weeks two and three. I was feeling pretty good when it was time for yet another infusion.
|1st day of chemo … let’s get this show on the road!|
I underwent four infusions of the three drugs. My tumors responded. They didn’t go away, but they shrank. After four treatments, my oncologist decided to change the treatment. For four more treatments, every three weeks, I received Avastin. I am one of the unusual ones. Avastin made me as sick as the three-chemo infusions had.
However, my tumors had responded. They shrank. They didn’t spread. My oncologist was happy. He decided to give my body a break and stop all treatments for awhile. He expected my tumors to remain stable. But, a CT scan revealed that it wasn’t to be. The tumors had grown back to nearly the size they had been prior to beginning treatments.
The oncologist told me that I basically had two choices. I could begin another line of chemo, with a drug that wasn’t as effective and that had worse side effects than those I had already had. Or, I could participate in a clinical trial. It was not a difficult decision for me at all. I chose to go into a clinical trial.
I really didn’t have great expectations for extending my own life, but I wanted to help others coming up behind me. So, I went to the UT Southwestern Medical Center, one of 69 NCI-designated cancer centers, in July 2013.
Nearly immediately, I was fortunate enough to get into a Phase III clinical trial. In this Phase, the drug or treatment is given to many people to confirm its effectiveness, monitor side effects, compare it to other treatments, and collect information that will allow the drug or treatment to be used safely. In my trial, the efficacy of the experimental treatment, immunotherapy, was compared to a known and common chemotherapy, Docetaxel. I was happy that I drew the straw that allowed me to receive the experimental drug.
Entering the clinical trial was the best thing that could have ever happened. I now have been in the trial for over two years. I responded to it immediately. Since I began the trial, my tumors have been completely stable. I have very, very few side effects. The worst happened early on – my thyroid quit working properly, so I now take a little pill once a day.
I go every two weeks for blood tests, doctor visit, and treatment. The treatment itself takes an hour to drip. Until recently, I was required to have CT scans every 6 weeks. However, the drug company amended the trial plan and I now have scans every 12 weeks.
|Sharon, my Nurse Practitioner|
|Grace, the nurse who usually accesses my port|
|How much more is there?|
The clinical trial and the immunotherapy gave my life back to me. I am able to live fully and completely – at a time when no one expected me to still be alive, much less living well!
|October 2015 with Barney|
There are actually very few days that I wake up and do not feel blessed. And, for that, I am very thankful. My nature is to look on the bright side of life, which makes me a much happier person than I could be!
But, today’s entry has to do with just how fortunate I really am to still be here among the living.
We know the stats … only 17% of the 221,000 people diagnosed with lung cancer in 2015 will still be here on earth in 5 years. Get a stage IV diagnosis and that percentage drops into the single digits. Scary stuff, lung cancer.
Consider me lucky because I happen to know several people who are 5+ year survivors. I hope to know more and more as those I know pass that milestone. I have 2 more years before I celebrate 5 years. Every day that passes, I get closer!!
I entered this immunotherapy trial I am in back in July 2013. It was, essentially, a last ditch effort to stay alive. Last week, I sat for my 55th or 56th infusion. 26 months.
My doctor and my immunotherapy clinical trial have been in the news this week. My doctor is a co-author on a major international study … which just happens to be covering the trial I am in.
This article, http://www.dddmag.com/news/2015/09/bmss-nivolumab-opdivo-extends-survival-rate-lung-kidney-cancer, has a paragraph in it that really brings home how special it is that I remain among the living.
At one year after treatment, 51 percent of the 292 patients treated with nivolumab, a PD-1 immune checkpoint inhibitor, survived, compared with 39 percent of the 290 patients treated with docetaxel. At 18 months, survival was 39 percent among those treated with nivolumab and 23 percent among patients treated with docetaxel, the study found.
Wow. Only about 119 of the nearly 300 who started this study were still alive after 18 months. I wonder how many remained after 24 months? I know that I am the only person in the Dallas area that remains in my trial. That’s been true for at least the last 12 months. I never really considered the fact that the others may have died. I just thought they got out of the trial. I hope that’s all that happened.
The press release featuring my doctor (with a little quote from me!) can be found at http://www.newswise.com/articles/immunotherapy-superior-to-chemotherapy-for-lung-cancer-in-international-trial-involving-ut-southwestern-cancer-researchers.
I don’t know why God has chosen to leave me here on this earth. I am glad He has. I am not really ready to die. I am having a great time here. But, heck, the alternative is surely not something to dread when you believe like I do. Streets of gold and living in the presence of Jesus … not a bad gig at all 😃😃!
Still, every day I am made more and more aware of just how fortunate I am to still be alive. And, I resolve to be even more diligent in bringing to the attention of everyone I know, whether they want to hear it or not, the fact that lung cancer happens – to anyone with lungs – and it is deadly. We need more research funding. Lots and lots more research funding. For me … and for everyone who comes behind me.
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:
- 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.
- 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.
- 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.
- 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.
- 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.
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.
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.
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.