Before I was diagnosed with breast cancer in 2018, I didn’t know much about cancer. My dad died in 2014 from stomach cancer so I knew a little about that and how he felt and what he went through. But there was a lot I didn’t know. Now I’m seeing that other people don’t know as well, which I understand.
One thing I have found since my diagnosis, if you have your hair, people don’t think you are as sick. If you don’t go through chemo and “just” radiation, people think you are lucky. Once you are done radiation (or chemo), people think you are done and cancer free. I’m honestly not sure when I will feel that I am cancer free. I had a follow-up mammogram 6 months after radiation ended and it was a clean mammogram! Woo hoo! So excited but not saying cancer free. I said there was no evidence of disease.
Prior to being diagnosed, if someone I knew was finished with chemo or radiation, I probably would have thought they were on the other side of their cancer battle and good to go. That’s what a lot of people think when they see me. The me that goes out for a drink or dinner is usually happy. What people don’t know is that I may have rested all day just to have enough energy to go out at night. Once chemo or radiation is done for many breast cancer patients, that is not the end of the treatment.
My treatment for the next 5 years is hormone therapy. Not to go into too much detail but I get a quarterly shot and take a daily pill. From this comes weight gain, fatigue and joint pain. Not everyone who has this treatment has the same side effects so these are just my side effects. Unfortunately, taking a nap or taking a pill to offset the joint pain does not help aleve the side effects. This will be my new normal for the next 5 years. There isn’t a magic cure to have the side effects go away. I will gladly deal with these side effects if it means a lower chance of recurrence.
So prior to being diagnosed myself, I had no clue that even though two different people have breast cancer, their story is not alike. There is so much more to their cancer story than the stage of their cancer. Their fight doesn’t end after surgery, chemo or radiation. They may be out smiling, having fun, looking like they are having a great time on social media but in reality they may not be feeling that great. My diagnosis has brought me so many great things…closer with friends and family…appreciation of life…and definitely empathy for others. So I may have known so little about cancer before my diagnosis…I now know a bit more since my diagnosis but there is so much more to learn.
I'm Team Jodi 
I just read your article on yahoo, Even Though I Didn’t Need Chemo… WOW, you took the words right out of my mouth, so says Meatloaf, and man do I feel like a meatloaf. I am 5 years post lumpectomy. Small mucinous tumor found at my mamo. Barely a stage 1, found out on a Tuesday, had it out on a Friday. HER2 positive and I’m BRCA Neg. I didn’t need chemo and I chose not to do radiation. I do take the tamoxifen for 10 years, my onc says 10 is better than 5 and the Effexor to offset the affects of the tamoxifen which are mood swings, hot flashes and who knows what else really and ambien for the not sleeping at night, but I can sleep like a cat during the day.
You’re right nothing offsets the fatigue, the weight gain and the joint pain. Strangely in my 5th year, those things seem to be worse. I was never skinny, but a solid size 12 that was always too big at the waistband, now a 12 would feel skinny. The fatigue, it’s been worse this summer more than I can ever remember. I didn’t even feel like going to the pool, and trust me, I can pool 8 hours a day. I can drink water, go #2, not eat, exercise and wake up having gained 3 lbs. I work out 5x a week at Orange Theory, a tough, tough workout, harder than I’ve ever worked out in my 25 years of working out and this body DOES NOT CHANGE, at least for the better.
Cancer changes you that’s no doubt. It costs you a lot of money, even with good health insurance. It takes your time, it takes your energy, it makes your hair thin, it makes you tired. It makes you hurt for your friends that are going thru it, your friends that have a more aggressive form, your friends who have lost their hair, their job and their cancer has spread to their spine, lungs,and brain. It makes you pay attention to the stories and experiences of others. In a way it makes you feel guilty that you “got lucky” with an easy kind, a kind that was fixable, curable and responded to treatment. It makes you wonder if your luck is going to run out someday, will I get the “bad kind” later? And, some days, most days, you don’t even think about it. You forget that it’s the meds that make you feel like you do because you’ve forgotten how you felt before. Maybe this is what 52 feels like, I don’t know, I’ve never been here but I don’t like it! When you have to write down what meds you’re taking and why and when someone says, they’re glad you’re a survivor, glad that it’s in remission, those are strange words for what I had and how I feel. I had this thing, it’s gone and now I don’t. Others are survivors, others are in remission, me, I’m just tired, fat and sweaty.
LikeLike
You took the words right out of my mouth…especially the last line! Thank you for saying this. I am not a writer but I had to get my feelings out somehow.
LikeLike
Yes!!! I feel the same!!! I survived DCIS- had 2 surgeries to remove the top of one breast. Then full radiation & tamoxifen for 5 years. I got so nauseous, but the oncologist thought it wasn’t important. I was living on Boost, and fell deep into osteoporosis. 5 front teeth fell out in my hand. I was devastated at the double hit to my self-esteem. I did have the gene analysis, but it came back inconclusive. So now, 13 years later the friendly check-in lady at my mammogram tells me that when breast cancer comes back, it’s usually metastatic. I was living with uncertainty. Now I live with fear.
LikeLike
Thank you for sharing. We need to figure out how to live without fear.
LikeLike
Thank you for sharing your story. I am at the beginning of this road, lumpectomy scheduled in a couple weeks. I’m scared of everything; what will they find, will radiation have long term effects to my body, can I tolerate the side effects of the 5 years of medication. Reading your story and others like it give me hope that I can be okay too. Thank you, Jodi
LikeLike
Theresa, thank you and I completely understand where you are…I will never forget those feelings of being at the beginning of the journey. Feel free to reach out to me jwhoriskey@gmail.com if you ever want to talk more.
LikeLike