Does Cancer Ever Take a Day Off?

Diagnosis: Non-Hodgkin’s Anaplastic Large Cell ALK(+) T-Cell Lymphoma

I agree, cancer doesn’t take a day off. Cancer even wants to fight back when you’re in treatment, and beat you. But I say, no way, because I don’t and won’t take a day off, and I’m going to do everything I can to fight and beat this (by the way, I’m winning).

I don’t think that’s a bad thing. It’s my reality and life right now, and I know it’s only temporary. Although it does feel like some days it will never end and I will not get back to normal. Since the day I was diagnosed it has not left my head; it has been my life since. Those three little words changed me and my life forever: “You have cancer.” Not a minute in the day goes by that I don’t think about it. I’m in a fight for my life, so it has to be my life, because being a survivor is the only option for me. I say all the time that cancer is a full-time job. So right now this is my life and my job, and one day soon I know I will get back to a “normal” life with one major change -- me as a survivor.

I feel I’m consistently reminded of cancer every time I look in the mirror. My appearance has changed so much. With that said, though, I have had great memories in my journey with cancer. When it’s with me it’s not all bad and actually is more good and great memories than bad. I have had a fight and a lot going on in my treatment, but I’ve come out on top, and even in a bad and hard moment I have kept my positive and never-give-up attitude.

I just try to remember this will pass, too — I will get through this. This journey has brought out the best in me and the true me, who I didn’t even know existed. 

Diagnosis: Promyelocytic Leukemia (APL)

Does cancer take a day off? I don't believe it does. Every day is filled with thoughts of how will I feel today, how will my breathing be, will something new happen, to name a few.

I will say over the past year and a half of treatment I have had many thoughts about my cancer -- some, as you can imagine, not so good. I try to stay positive and keep myself busy while I count down the days until I am done with chemo.

I am positive that if you were to ask my wife this question, her response would be that it does not take a day off for her as well. I can only imagine the thoughts she has -- how this has affected her and what she goes through on a daily basis, from making sure my medications are ready to worrying if I am doing OK while she is at work.

Cancer doesn't sleep, doesn't rest. It is with you 24 hours a day.

Diagnosis: Philadelphia Chromosome-Positive Acute Lymphoblastic Leukemia

Cancer doesn't take a day off. This statement holds true for me even in remission and recovering from transplant. While I was in active treatment before I was in remission, I knew I had to take the necessary steps recommended by my doctors to achieve remission. My mind was primed and ready to fight, but would my body stand up to the grueling chemotherapy? Thankfully my body was good at defense, and no matter how many times it got knocked down it came back roaring and amplified to continue battling the incessant leukemia.

Achieving remission was a huge relief -- Vanessa 1, Cancer 0. I needed a bone marrow transplant, so I had many goals outlined for me in order to have the best odds going forward. As I waited for an unrelated match I continued chemotherapy and continued to keep the cancer at bay. This time around I didn’t have to spend a month at a time in the hospital; only a week was required. The comforts of home definitely helped in my recovery, but the cancer still didn’t allow me to take a day off. My husband and I were always very vigilant of the changes my body was making as it tried to rebuild itself after chemotherapy, much like a boxer going back to the corner to rest before the bell tolls for the next round.

Once a match was found, I was able to start the preconditioning for transplant: total body irradiation and high-dose chemotherapy to bring me to the brink of death, only to have a total stranger’s cells save my life. Even at that point I knew if this transplant didn’t work, my cancer was ready to take over. No matter what obstacles I endured during transplant, it was all worth it, as I am two years and five months post-transplant. Vanessa 2, Cancer 0.

I am still on an oral chemotherapy study because of a chromosome mutation, so I am in clinic every month for blood work, and it is a constant reminder that it may come back. I am confident in the drugs and my doctor’s ability but it has revolutionized my life, some for the better and some for the worse. I changed my eating habits and strive to get back to the physical peak I was at before cancer. I am more cautious about my health and the things that can endanger it. Even though I am in remission and recovering, the domino effect that cancer has had will never go away. I continually find new things that I need to overcome to get back to living my life the way I want to.

I have persevered, but for me it is something that is always in the back of my mind. I work very hard not to have it in the forefront, as it tries to taint my thoughts into sinister ones when something doesn’t feel right. Talking with loved ones and fellow survivors, along with exercise and mediating, help me overcome those fears of relapse and remind me that I cannot control the future, but I can control what I am doing today. Today and every day I will fight to live my life to the fullest.

Diagnosis: Colorectal Cancer

I don't know if I would say that "cancer doesn't take a day off."

Since cancer is now, and always will be, a part of my life, it is important to find balance. There are some days when it is in the forefront of my mind (e.g. chemo days, scan days, appointments), but I spend little time dwelling on the things I can't change.

I used to think about it a lot more, but after three years it is just part of my routine.

Diagnosis: Mantle-Cell Lymphoma

Does cancer ever take a day off? Can you ever put it “out-of-your-mind” after diagnosis? The sad reality is no, you can’t put it out of your mind, and you can’t take a “day off” from cancer. Once diagnosed, cancer will grip your mind with every fear you’ve ever had about the disease. When I was first diagnosed, I was consumed by all that might happen to me and my family because of cancer. Initially, no matter how hard I tried, all my thoughts eventually steered back to the fact that I had cancer. Even when I wasn’t in treatment and the disease was inactive, my mind still thought about the disease and all that could go wrong.

I remember one very somber ride home a few years ago after getting my daughter settled into her new dorm room on freshman move-in day. As I rode home, my mind was wondering if I would get to see her graduate from college, or would she have to attend my funeral midway through her college career. Try as you might, it’s hard to pretend a different reality when you have cancer. But in the same sense, you don’t have to be a fatalist either; you can train your mind to think differently.

Here’s a fact about the human mind and cancer: Your mind will latch onto every bit of negative it can regarding the disease. When good things relating to your disease happen, your mind will counter with all those ”yeah, but…” thoughts. It will be a daily fight to keep your mind positive and not lose hope. This is why it is so important to daily recharge your emotional batteries, so you’re always at full strength to fight off all the negative. Some of the biggest cancer battles you’ll fight will be the ones inside your mind. In my Seven Steps to Persistent Perseverance you’ll find some tools to help train your mind so you can win the mind games.

In my nine-year battle with cancer, I did see my daughter graduate from college, I did see my son get married, and I have been able to enjoy countless hours of fun with my first grandchild. Was every day easy? No. Did my mind want to think about cancer all the time? Yes. But I trained it to stay positive, remain hopeful, cling to faith, and to keep making plans -- steps I continue to follow even now as a survivor.

Diagnosis: Chronic Lymphocytic Leukemia

We tried to keep my diagnosis a secret for as long as we could. It gave us time to adjust to the diagnosis. We told only our family and a few trusted friends. We wanted to keep our lives as normal as possible, and the doctors said it would most likely be 10-15 years before I would need treatment.

When we first found out the diagnosis of leukemia, I don't think it ever left my mind totally. I felt great, I was told I looked fine, but my cancerous white cells were multiplying constantly. It would be five years before I needed treatment, but I could feel the loss of energy as the cancerous cells multiplied. It was always on my mind, and my wife could see the changes.

When we finally told people about the cancer, the news spread quickly, and people constantly asked how I was doing. People were surprised because I still looked so healthy. As the word spread about my disease (I was a teacher and athletic director), I found that the news took over, and it was impossible to go one day without being asked ""How are you doing?" or told, "I was so surprised to hear the news," and "You look so healthy," etc.

As the treatment process started and people grew concerned, our family and close friends stepped up to help. We were constantly asked how they could help. From the time I was diagnosed, through all the treatments, the bone marrow failure, the bone marrow transplant process and even now through the recovery process, there isn't a day that cancer hasn't been on my mind.

I am improving every day and looking forward to the day cancer isn't the daily concern of mine!

Diagnosis: Pancreatic Cancer

Cancer doesn’t take a day off ... A truer statement couldn’t be said. As a patient, and going through treatments, every day is a reminder that you have a disease within your body that shouldn’t be there. Between healing from a surgery, going through treatments (chemo, radiation, etc.) or going in for tests or doctor visits, it never seems to end.

All of it is taxing and you can get discouraged. But you have to dig deep within yourself and cling tightly to the ones around you for strength. There are days when you just don’t want to get out of bed – and that’s OK. We are not superheroes. We’re humans, and our bodies need to heal and rest.

As for me -- and I’m currently cancer free -- I think of cancer every day. Not just about myself or my circumstance, but for all the others that are recently diagnosed, currently fighting, caregiving for their loved ones. Cancer doesn’t take a day off – it affects someone’s life every single day. That is why I cannot stress how important a support system is. Obviously doctors, nurses, technicians, etc., are with you to get you well, but what about the blue days or the days when you just don’t have it in you. You turn to your support or your faith to give you that ounce of energy to continue on.

I have found that providing encouragement, support, sympathy or whatever is necessary is as much a relief to me as it is to the one receiving it. What better way to let someone know that you can survive, than by being a survivor yourself and showing them that cancer can take a day off from your own life to help someone else.

A story comes to mind that continues to give me encouragement. During one of my follow-up visits at Froedtert, I was checking in at the lab, and a young couple overheard me say that I was a patient of Dr. Doug Evans. My husband and I sat down and were waiting our turn when this couple approached us and very hesitantly asked if I had pancreatic cancer. Without skipping a beat, I said, “Yes.” They looked at me like I was from Mars. How could this healthy looking woman be a pancreatic cancer survivor? You see, the husband had just had his Whipple procedure and was back at the hospital for his first follow-up. He thought he had been handed a death sentence. But upon seeing me, and us talking briefly, I gave him some encouragement. I let him know that although he was feeling lousy, and that he had a hard road ahead of him, it didn’t necessarily mean that all people die from this cancer.

I often think of that couple, and I can say that as of June 2015 he was doing well. I wonder if he thinks of me as often as I think of him and his journey.

Cancer may not take a day off, but it can take a backseat in your life.

Diagnosis: Stomach Cancer

Yes, cancer does not take a day off, and future cancers are possible, but the cancer team at Froedtert is also not taking a day off.

I am very thankful that the cancer team I have is very vigilant in monitoring my past cancer, currently on a quarterly basis. The team gives me the assurance that I need not worry about the cancer, all the while working with me and very successfully adjusting the after-effects of cancer so that I can enjoy this physical life to the fullest. I happily go about my life not worrying about the cancer and currently enjoying the beauty of summer with gardening, fishing, water sports, Bible study and improving my health.

And I’m starting to plan on what I will be doing this winter. Cruise? Southern winter travels? Take a course in school? And a winter exercise program is definitely in the works. As you can see, there’s not much time to worry about cancer.

On a side note, though, I still get preventative cancer care, and just recently I went to the dermatologist to check for skin cancer, and yes, I am having some suspicious growths removed, and yes, "cancer does not take a day off."

Diagnosis: Sarcoma - Desmoid Tumor

For me, cancer doesn’t usually take a day off quite yet, but maybe someday. While I’m now cancer free (and fully intend to stay that way!) the physical effects of my cancer treatment do pop up day to day. My tumor resection involved removal of a majority of my abdominal muscle on the left side of my abdomen, and part the reconstruction was to use a quad muscle from my left leg to restore some of that strength and stability in my abdomen. Thus, the effects are hard to ignore – instead, I have just adjusted expectations and continue to settle in to new norms. My left leg has obviously had challenges with only three quads left, and my remaining abdominals and back muscles are continuing to learn how to supply me with core strength and stability.

Instead of focusing on what I cannot do – or perhaps, cannot do the exact way I used to do it – I choose to focus on what I can do, or to find creative ways to do the task at hand. I remember the exact moment I realized this. I was only couple months into my recovery from surgery and hadn’t even started physical therapy yet. I was at home by myself, and had dropped a DVD on our hardwood floor. My “grabber” didn’t have the dexterity to assist me in picking it up. There was no possible way I was going to be able to get down to the ground (much less back up again) to grab it. A natural reaction to this situation could have been frustration or anger – maybe just to leave it there until someone else came home to pick it up. I chose to see it as a challenge. After a little thought, I grabbed a roll of scotch tape, made a loop, and stuck it to the end of my grabber. I had the DVD in hand in no time and I didn’t compromise my safety at all in doing so. (And by the way, I can now pick anything up off the floor with no physical aids…. It might not look exactly the way you do it, but I can get the job done!)

I do believe this mindset has greatly impacted my quality of life post-cancer. While physical challenges do still creep in, I don’t see it as a pity – I count my blessings. I choose to let it help me keep my life in perspective. Take stair climbing, for instance. After many, many months of physical therapy and personal commitment, I can now use stairs both up and down without using my upper body to support me on the railing. So when I decide to take one stair at a time when I carry something like a basket of laundry with both hands because I feel safer that way – WHO CARES?? I’M CARRYING SOMETHING DOWN A FLIGHT OF STAIRS AND NOT EVEN HANGING ON TO THE RAILING!! WHOO-HOO!! Do you know how crazy cool that is for someone that has a quad where her ab muscle used to be??? I do. But don’t worry – I’m not settling. I know at some point I’ll be strong enough to take them reciprocally with that laundry basket in my arms. For now, I’m just taking things one step at a time.

Diagnosis: Dedifferentiated Liposarcoma

I do not agree with the statement, “Cancer doesn’t take a day off.”

So far I have been cancer free for two years. I do not keep thinking about the cancer or wondering if it is coming back. I have to be positive; my life does not revolve around any illness.

When I was a child growing up in Jamaica, there was a saying that went, “Belief kills and belief cures.” So I speak life over myself, and I believe I am healed.

So think positive.

Diagnosis: Papillary Thyroid Cancer

I don’t think that cancer has taken a true day off from my mind since I was diagnosed five years ago, but it isn’t always consciously in my thoughts, and I’ve made some choices on how to move forward and function as a cancer survivor.

For the first couple of years after my diagnosis it was much more present in my daily thoughts while I was going through surgery, then treatment, then waiting to see if they got all of the cancer. Sometimes it hides in the background, and I don’t really focus on it. Sometimes I wake up thinking about the scar on my neck, or my next appointment.

For three years, I went to appointments, had tests done, and was in a “watch mode” until I “re-entered” the daily cancer world a few months ago having a surgery (a neck dissection) to remove cancerous lymph nodes. Every time I have an upcoming appointment at the Cancer Center, I’m obviously very aware of my reality as well.

But, my reality isn’t just that I am a cancer survivor. I’m also a mom, a girlfriend, a daughter, a friend, a social worker, etc. I’ve made the choice to focus on all of those parts of me, and celebrate the wonderful life I have.

I remember thinking after my initial diagnosis in 2010 that having cancer would somehow change how I looked at life. Five years later, I feel confident that even though I have forever been changed by this and have additional fears and worries when something feels off in my body, or anxiety leading up to my next appointment, or a strong emotional reaction when I hear someone else’s story about cancer, that I am a stronger person because of it.

Diagnosis: Papillary Thyroid Cancer

The statement “Cancer doesn’t take a day off” has been true for me at certain parts of my journey.

The first 2-3 years after I was diagnosed I would definitely agree that there wasn’t a day that went by that I didn’t often think of thyroid cancer and how the treatments and surgeries were affecting me. Those first few years I had three surgeries, two treatments and multiple appointments for blood work and neck ultrasounds/CT scans, so I felt like I was immersed in “getting rid of” the cancer. When I was busy, which was often, my mind would go to other things, but it was very difficult to not think about cancer and be scared about the future.

After they removed my thyroid it took a long time for my body to get used to a drug replacing it. To make sure the thyroid cancer doesn’t grow, my thyroid levels are kept at a very suppressed level, and for me some of the side effects of that are night sweats, increased anxiety at times and some heart palpitations. I often forget that I have thyroid cancer because the way things are now has become my new “normal.”

Over the past couple years I have definitely felt more like myself and I think about cancer much less. I don’t feel sick at all and I am still involved with activities that I was involved in before being diagnosed, such as playing tennis and being active. When I get close to the time when my blood work is being checked and my neck ultrasound is happening, I do get more anxious and think about my cancer a lot! As I have talked to other people who are in a similar situation, it seems like this is a normal feeling. Before I was diagnosed I did not feel sick or have any symptoms. Because of this, I do get uneasy when something in my body doesn’t feel right, because I worry that it could be associated with my thyroid cancer or even be another type of cancer.

Over the past five years, I have dealt with my thyroid cancer like someone would a chronic disease, so although I definitely don’t think about my cancer on a daily basis, it affects me daily. With that being said, I feel healthy and lucky to be where I am today.

Diagnosis: Myxofibrosarcoma

Is it possible to take a day off from cancer? I believe that one must go on with one's life in spite of being diagnosed with cancer.

Certain factors get in the way, such as tiredness from chemo, but every effort must be made to retain one's normal routine. If one fails to do this, one will then begin to get in a “feel sorry for oneself” syndrome.

When you maintain a “normal” schedule, it puts you in the driver’s seat, and you gain control over your life. We should control our lives, and not let cancer control us. Worry solves nothing, but it creates more worry and agony.

Perhaps you might say, "Easy for him to say." I did have 264 hours of chemo, 25 radiation sessions and 10 cancer surgeries. Been there, done that.

Be well.
Joe