Cancer – What Does It Feel Like?

Have you ever wondered what it felt like to have cancer? What physical and emotional hardships come upon you, and what is the breaking point of sanity? It is depressing thinking about cancer and how it affects a person’s life, and the toll it takes on the relationships around you. Want to take a sneak peek? Below is a window view of my life with cancer…

“What does it feel like to have cancer”?

1. It feels like a Tylenol size lump on my left breast. After 1 week of watching it, and it wasn’t budging, made an appointment with a local Gynecologist. They didn’t take it too seriously, were more concerned about the dense tissue they found on the right breast… but listened to me, and scheduled a mammogram with an ultrasound as added caution.

2. Trepidation and what the hell is going on? During the ultrasound, the radiologist came in after reviewing the images and conducted her own test, measuring and marking areas of concern. I was told that a biopsy was needed, but not to worry as 80% of them come back negative. Seeing the blank look on my face, the only word that came out of the nurse’s mouth, calcification’s… call for an appt. My intuition said it was something.

3. Being dragged through a lake on an inner tube, when is it going to end? Waiting a week for the biopsy to take place. A different radiologist conducted an ultrasound guided fine needle biopsy, explaining every step and she made. She ‘vacuumed’ 5 samples out of the breast and followed it by shooting a metal marker into the lump (I cannot even described what this feels like, just know that I don’t wish it on my worst enemy). I asked to see the samples, having read that if the liquid came out clear that it was benign, but that if it came back cloudy or bloody then it was surely malignant. I told her what I had read and she tried to convince me that it wasn’t true. I wasn’t feeling confident, as I saw blood in the samples. A nurse gave me the # for the results. The next 3 days drag on and on.

4. A hockey puck hitting my chest from the great Wayne Gretsky. I have Invasive Ductal Carcinoma, less than 1 mm in size and a grading of 4. Can’t breathe, instantly go on autopilot.

5. Death sentence. Thoughts of never seeing my babies graduate, get married and have babies of their own flash quickly through my brain.

6. God is testing me. I made a comment that I couldn’t believe a co-worker was giving up the cancer fight and waiting around letting it consume her. I said that if it was me, I would be crossing everything off my bucket list. After 2009, I will no longer think for someone else… you DO NOT know how you are going to react when you find out you have the cancer beast. I hope I passed “HIS” test!

7. Insomnia. Lying in bed, PT spooning me cupping the traitor amongst us, staring at the wall trying to fall asleep. Waking up, seeing that same damn wall and realizing it wasn’t a dream, it’s my reality. Over and over and over again.

8. Losing a body part. When the surgeon was laying out the surgical options, I was confident in saying “just take the damn breast”. PT, on the other hand, couldn’t understand why I was so nonchalant about losing a body part.

9. Secret. Finding out that I had cancer the eve of B’s birthday. Hosting family for the weekend festivities and holding it all in and being “happy”. Maintaining the secret for PT’s side so that they can enjoy the birth of their first granddaughter.

10. Unthinkable. Getting the courage to tell my sons (5th and 8th grade) that Mom has cancer, it would change our lives for the short term but promising that I would be okay. All the while keeping my fingers and toes crossed hoping that I could keep that promise.

11. Foolishness. Wonderful co-worker wanted to throw a bon voyage party for the malignant breast and I turned her down- What the heck was I thinking? That would have been so much stinking fun!

12. Secondary cancer. Is the enlarged ovarian cyst that is found before the surgery the main culprit–had the cancer already metastasized? Blessed be to God-this was proven false a few days later–the longest days of my life.

13. Survivor’s guilt. I have been given a second chance, my co-worker was not. To this day I still credit her for saving my life. The eve of my mastectomy she lost her life to kidney cancer that had metastasized throughout her body. Two days after my surgery, I walked into her funeral and paid my respects to her family.

14. Like a rump roast. I was warned that the blue dye used to locate the sentinel lymph node would not only turn my breast blue but my urine as well. Was I ever surprised instead to have my big ole tush turn a beautiful shade of magenta–if only it didn’t itch like hell and didn’t peel like a bad sunburn.

15. Squealing like a pig. I had drains coming out of me for 2 weeks, the goal being retrieving less than 30 cc’s for 3 days straight. The first few times the drain was ‘stripped’ I squealed, literally pulling the fluid out of my body. If only they could hook up a few drains and I could ‘strip’ the fat out of my legs and tush… Hmmmm… I could make millions.

16. Like being in the corner of a high school dance waiting to be asked to dance. Pathology testing the cancer cells to see what they are receptive to. What makes you stronger cancer cells, ER+, PR+, HER2 or none of the above Triple Negative?

May I have this dance so that I can kick your ass?

17. Not enough empathy for PT. Everyone is worried about me… who is focusing on his needs… hoping that he is confident enough to vent to his friends without violating my privacy. I cannot comprehend the angst and hardship that caregiver’s must go through.

18. Like trying on my first bra as a teenager, except this time I don’t have to wonder how big my breasts will be… I get to determine the size and the look of my breasts. What size is your pleasure???

19. Overwhelming sense of community. The outpouring of cards, flowers, meals and support from the people in my life.

20. Claustrophobic. Thirteen high school girls and boys were taking part in the “Locks of Love” event at the high school the day before my first chemo treatment. It was obvious the kids were nervous, their feet twitching a mile a minute, such a brave and loving thing to do in front of their classmates. When a co-worker’s daughter pointed me out to some other girls’ I quickly headed out the side door trying desperately to catch my breath and stop crying. I later learned that beautiful girl wanted to back out (she was nervous and scared to cut her long hair), but when she saw me she decided she was going forward in my honor.

My one true regret of this day… not having the courage to be part of the event. How do you think the 200+ students and teachers would have reacted if I had had my hair cut and then shaved for Locks of Love??

Each word I write is a seed being planted, waiting to be nurtured and grow, hoping to heal myself and be a better person going forward.

21. Scolding. Being told by my first oncologist to stay away from the internet. It would only confuse my mind with all of the bad information/pessimism floating around. Hello Doc, how do you think I was comfortable and confident coming to see you… I Googled the hell out of him.

22. Party. We were welcomed with open arms to the first round of chemo. A three-time survivor greeted us, gave a very long speech and a goody bag. I was taken aback, she was invading my space, I wanted to keep this a private affair and I was in my zone (mentally). Three years later I still can’t tell you one thing she preached, but I do appreciate her encouragement and sisterhood. I still have every blessing and prayer that were in that goody bag.

23. Science project. The systematic way the drugs must enter the body. Steroids and nausea pills the day before and day after chemo, cushioning the body for the devil to do its deed. The actual day begins with Benadryl, prednisone, 2 bags of Taxotere and 2 HUGE syringes of Cytoxan. I was a walking pharmaceutical!!

24. Fire. First round of Taxotere missed its mark ~ burning the vein six inches up my forearm. Angry, red, painful to the touch. Five months later… still visible; eight months later it has disappeared, taking the vein with it.

25. Head in the clouds. I watched too many movies, seeing cancer patients puking their guts out and lying in bed. For me, reality was fogginess so thick that even a lighthouse couldn’t be seen from my rocking ship. Treatments were on Thursday, by Sunday I was on that ship rocking side to side desperately looking for that light. Finally Tuesday’s rolled around… fog clearing, lighthouse straight ahead.

26. Rat on your head. The appointment with the wig specialist cancelled, after being told that this is a very traumatic/emotional experience, she will allow an hour for me to find a wig. What? You mean this isn’t a chance to fulfill PT’s wildest fantasy… long hair, short hair… red, blond… oh, the possibilities are endless. I am fully aware that this can be emotional, but I choose to make it as fun as possible. God bless CB for dropping everything on a Sunday in the hunt for a wig shop. And God bless the little oriental lady who probably thought we were nuts giggling through all of the hair!

27. Mary J. Blige. Deciding the wig is not for me, thankful I spent $36 versus the upwards of $2K I would have spent at the specialty wig store. Blessed that HM brought me a dozen bandanas, every shade you can imagine. Deciding that I am better off channeling my ‘biker babe’ image than the Mary J. Blige look. For anyone who is going through treatments, I would love to send you this wig. It is stunning, it just wasn’t for me. Maybe we can have the traveling wig, connecting and bonding people along the way.

28. Irony. Walking up the stairs at work, hearing a conversation on the importance and significance of zodiac symbols, and being asked for my sign. Mood lifting instantly, bright smile plastered on my face saying, “Ironically, I am a cancer”. That little snippet of irony made me smile all day.

29. Million needles are piercing my scalp and each hair on my head weighing a ton. Two weeks after starting chemo my hair started to fall out. Two and a half days later, the pain and the constant hair balls (leaving presents for people is only fun for so long and lets face it… very juvenile =) were too much; a dear friend shaves my head.

30. Waiting game. Waiting for appointments, waiting for test results, waiting for life to feel normal again.

31. Sprint. How many miles can I walk each day (averaged 3.5 per day), minimal days off work (got lucky with the timing and 2 fell on holiday weekends), keeping so busy there is no time to breathe. I wish I had listened to my boss who said, “Remember, this is a marathon, not a sprint”! To wind back the clock, I would have listened to him!!!

32. Weight gain. Seriously, I have to be the only person who gained weight during chemo. That was supposed to be the one POSITIVE from it all… losing some weight. Nope, must have broken a record by gaining 15 pounds!

33. Orgasm. The feeling when the shower spray hits my bald head and wanting to lose myself, never leaving that stall. Absolutely amazing! This is the only thing I miss from losing my hair.

34. Relief. The BRAC1 and BRAC2 genetic testing came back negative. Confirms my belief that my cancer is pure environmentally earned.

35. Regret. Why didn’t I have the hospital put in a port? I am running out of veins, the T & C burning rubber after each treatment… and they refuse to use my left arm due to the mastectomy.

36. Your favorite glass vase crashing to the ground, shattering into a million pieces. White blood cells taking a nosedive to.07, pushing me into isolation. Someone please tell me how a person can feel so good, but the immune system has shut down?

37. Eighty year old woman. The Neupogen and Nuelasta shots to keep my white blood cells up make every step I take sheer torture. My hip and leg bones ache, but I push forward… walking uptown to breakfast with my sister and K… even walking the 6 miles roundtrip to receive this dreaded shot.

38. “You’re Outa Here”. One of the hottest days of the summer. Umpire had to be dehydrated, calls getting worse as the innings were getting longer. The M’s and the D’s egging him, disputing every call. PT opens his mouth after we were all told to zip it, and the ump actually kicks him out of the ballpark. Still hilarious to this day!! If anyone knows PT… coach… athletic director… teacher, and the most mild-mannered guy I know getting kicked out of a ballgame. Still one of the best stories around!!!!

39. Bulls eye marks the spot. I had a red bulls eye on my throat all through the treatments. Don’t understand the rhyme or reason of it, and very self-conscious about it.

40. My heart is breaking. Since losing my hair, B wants nothing to do with me. He is so freaked out by me that he is avoiding this house like the plague. My heart and soul breaks every time B walks away from me, gives a smart ass response or rolls his eyes. PT tells me to give it time, he will warm up to me. Don’t get me wrong, I am eternally grateful for our dear friends and neighbors who opened their home to him for 4-5 months, it was best for B. What was best for me, was having a son accept me emotionally and physically, and not repulsed by the very sight of me. For him to know that I am taking the steps and going through hell, hoping to prolong my life and praying to have the chance to watch his kids grow… my glorious, hope to have someday grandchildren!!

41. Water Balloon! I swear to God it felt like I had a water balloon for a breast. The tissue expander is filled with solution, and when tapped feels like a taut balloon ready to pop. You could have bounced a quarter off of my breast, lol! Thank you Dr. B for making the decision for me to replace it with silicone gel. Much more natural looking and actually feels real (although it still freaks me out not to have any feeling. Contradiction I know). I will admit, though, years from now it would have been hysterical if it had popped. Can you just see it… you are talking to me and all of a sudden one of my breasts goes flat as a pancake!

42. Lightening Bolt. Nerves were cut during the mastectomy. I was told that they would reconnect over time, and to expect shooting pains across the breast and under the arm. The first one took my breath away, and if I was honest… they still do! Enough already!

43. Foolishness. Who in their right mind would stay home alone after a treatment, AND try to paint a master bedroom and 2 closets? After 4 treatments I was obviously not in my right mind. Worst 3 days of my life! Irony is, having zero luck finding bedding to match the robin egg blue walls, I repainted everything exactly 1 year later. Tip of the day: Find your bedding or material first, then paint your walls. Told you I had lost my mind! LOL!

44. Dry skin. Eyelids are red, sore and peeling. No amount of lotion is soothing. Finally got a glimpse into what K goes through on a day-to-day basis. Rough!

45. Relief. I may have lost the hair on my head, but I kept it on my arms and legs. Shhh… we will keep other area’s a secret!

46. Nervous. Anyone who knows an Italian, knows that they have big, bushy eyebrows (think unibrow) that need constant attention. Seeing mine thin out puts me on edge that I will soon be drawing them in.

47. Surprise! From the woman stopping me in the store, pulling on her hair, promising that it will grow back… to the security guard at a Casino drawing me into a conversation, making me feel at ease and not the least bit self-conscious about wearing a bandana in public. They added a tremendous amount of warmth into my long days!

48. Scared! Waking up from a nightmare, hearing the news that there wasn’t anything medically they could do for me. I didn’t have much time. Sweating bullets, checking on the boys, breathing their scent calming me eventually.

49. Cocktail. Gearing up for a ‘Making Strides’ walk in Brentwood, TN and having a fellow survivor walk up to meet me and ask what my cocktail was! Cocktail… what cocktail? We get to drink while walking… cool! Not!!! I finally realized she was talking about my chemo drugs, and the only ones having the party and receiving the inevitable buzz were our blood and veins. **On a side note-there are so many varieties of chemo drugs on the market. Your type of cancer and cell characteristics will determine whether you are given one or more drugs during treatment. What was prescribed for me Taxotere and Cytoxan may not be best for the next person. Cancer cells are very tricky little devils.**

50. Hives and one large Ass! After my third treatment, and on my birthday no less, I came down with a nasty case of hives. Oncologist thinks it was a reaction to the Taxotere and they would have to monitor the next dose, to make sure it doesn’t attack my lungs. I would like to believe it was all the great food I ate… grilled sausage with peppers, onions and mushrooms, my favorite potato salad made by my Mom, crisp corn on the cob and a store-bought cake (ok… the cake was awful, ended up in the trash… but a girl should not have to make her own cake… right!). Oh, lets not forget the fabulous chocolate cake that KG surprised me with at B’s baseball game. Now that was yummy! I have no idea what caused it, still had remaining hives on my palms and feet a week later, but I laughed out loud when the nurse stated “and you thought your ass was going to get big from all the cake you ate, it’s going to get bigger from all the steroids we are about to put you on”!

51. WTF! I can learn I have cancer over the phone, but I have to shell out a $40 copay to learn my colonoscopy turned out beautifully and my colon very healthy. Still have not gotten over that injustice!

52. Mouth Rot. The chemo is sucking all of the moisture from my mouth. Two large bumps have set up camp on the back of my tongue and seem to be there for the long haul, and to make matters worse, everything tastes like metal. So why am I constantly feeding my face?

53. Fatigue. I am so tired of being strong for everyone, bottling my emotions, putting one foot in front of the other, keeping the family schedule ‘normal’. I wish someone (other than my favorite husband), anyone, would just have the courage to wrap me in their arms and let me release all the pent-up emotions swirling through my body.

54. Invasion. My Mom was a trooper, making numerous trips down to care for me and the boys. I know the constant travel and worry took a toll on her. One particular arrival came on a Sunday following a treatment. Shame playing tricks on me ~loving that she is there, but wanting to scream because she is invading my territory and all I crave is solitude.

55. Bonus. It was a scorcher (similar to our current summer) and I have lots of frizzy, curly hair. Being bald meant no stressing over it, straightening it only to have it corkscrew the instant I walked outside. Small blessing!

56. Grieving. Farrah Fawcett passed away and Michael Jackson is getting most of the attention. She battled cancer for 3 years fighting every step of the way. I admire her strength and tenacity. Her outcome could be my outcome-I must continue the fight.

57. Aversion. I still cannot drink, or eat, many of the items consumed during the treatments. The oddest thing, I chewed ice constantly before finding out I had cancer. Drove PT nuts! Now even the thought of ice on my teeth makes me cringe. I prefer my drinks lukewarm and ice-free!

58. Care package & Inspiration. My brother-in-law’s ex sister-in-law (I will give you a minute to wrap your head around that one) was diagnosed with Stage 4 Breast Cancer a few months before my diagnosis. She started a blog to keep her family and friends informed on her prognosis and well-being. I got ahold of this site, Bliggity Bloggity Boo(b), and it was my lifeline in my darkest moments. When I found it, I literally read it from the beginning. Good thing it was a Friday, because it was a very late night. Since then her amazing niece and nephew (yep… his ex-wife) made me a flannel pillowcase to keep my bald head warm (isn’t that the sweetest thing!!), and Sue and I have become friends… even living 3,000 miles away. She probably has no clue that I considered her my rock (or her blog anyway) during this whole process. If she can have the strength and courage to kick cancer’s ass, then I have absolutely no excuse feeling sorry for myself. I am so happy that I will finally get to meet her in November. Woo Hoo!

59. Teenager. Went to the local casino with friends and they actually carded me. Are you kidding me? Nope, they weren’t! Biker babe must = youth, and weren’t they surprised to see my actual age on my license. Love it!

60. Anger. Consoling my MIL on the phone. Me, consoling her as she is crying on the phone. Something wrong with this picture, right? I finally told her to get her act together, that I needed happy people in my surroundings, telling me dirty and very inappropriate jokes. If she couldn’t do that for me she needed to stay away. Sadly, she did.

61. Rolling the Dice. The choices I made to save my life could have damaging long-term effects on my body. The chemo and the current cancer drug that I will take for many years could have damaged my heart, can lead to leukemia and uterine cancer, as well as, increased blood clots. Very scary on their own, but combined can make you quake in your boots. No regrets. I made the choices I made to increase my current odds. If these possibilities happen in the future, we will just deal with them one at a time.

62. Wink. I have decided not to get the one tattoo that PT could never say ‘no’ on. Couldn’t imagine PT having to break the news to the boys. “Sorry kids, Mom died on the table because she needed a nipple” LOL! Instead, my chest is proudly winking at all of you. BTW… on my 5th birthday… you will be able to find a tattoo somewhere on my body!

63. Routine. My routine is methodical. Every 3 months I visit with my Oncologist and run countless blood work (still wish I had that port), and every 6 months has me heading down to my surgeon for mammograms, ultrasounds, etc. It also finds me googling every little symptom I have. Sudden blurry vision and pressure in my left eye, must be a tumor forming behind it. Aching back… bone cancer. See where I am going with this. Every little lump, bump and bruise means something different for a cancer patient. For us, it is another cancer waiting to be discovered. We dread hearing the words that your cancer has metastasized.

64. Shock. Recently receiving the late night news that my tumor marker was higher than normal. It was a very long month waiting to take the blood test again… very thankful the numbers fell back into an acceptable range. Also very thankful for my team of Doctor’s and staff who have to make those phone calls (to someone) every day of the week. That is not a job I would want on my resume.

65. Chemo Brain. A very real reality for many of us. Disorganized, confused, hard time focusing and staying on task (trying to multi-task = instant anxiety), forgetting people’s names that I have known forever. BTW-please forgive me on that last one. It doesn’t mean I don’t love you, it kills me when it is happening and you may see a blank look in my eyes… I promise I am stewing over it after the fact. Afraid to open my mouth, because the words I am searching for do not come, or I say something totally inane or off subject. Tough one to swallow and praying for it to fade soon!

66. Mid life crisis. “You are in remission, go home… get on with your life”! Huh, how do I do that? That simple statement sent me into a downward spiral that I couldn’t pull myself out of. Maybe they should give us a step by step guide on how to move from fighting for your life to enjoying your life. I wouldn’t have wasted 3 years of my life trying to figure it all out. If only it could have been as easy as going out and buying a sports car!

Cancer has a face ~MINE, and a hand that my husband hopefully still loves to hold.

I am ashamed to say that prior to 2009 cancer freaked me out, equating it to an instant death sentence. I no longer think this…

Does this finally mean at the age of 44 I have grown up?

I am so glad I decided to take on this task. I hope I have helped someone out there in cyberspace. I do know that I have helped myself. I have finally moved passed that midlife crisis of mine, and I am ready and anxious to tackle the world (or at least my little section on Dana Dr.)! I have listed a number of negatives in this little journal of mine, but I need to be fair and say that there are just as many positives. I have a new appreciation for life! It is a magical world filled with so many opportunities. I have an amazing husband who puts up with all my shit. If the shoes were reversed, I may have taken a long walk ages ago off a very short pier! I also have 2 wonderful sons. They make me do and say crazy things, but I am so proud of the ‘person’ they are becoming. I have been blessed with friends who have my back, any hour of the day. The outpouring of support, whether it be through Wednesday night meals, inspirational cards, or the quilt that magically appeared on my doorstep, blows my mind. How cool is it that people actually like me?!!

I am relieved that I am also able to give back, raising thousands of dollars for the American Cancer Society and instilling the values of giving back and community to my children. Relay for Life was not an option for me in ’09. Visions of me being a paper bag, had me running for a bag to calm the hyperventilating within. These days I am proud to be a paper bag, representing survivors everywhere. Raising money for this worthy organization is important to me. They support so many with their educational tools and research, and I took full advantage of their resources during treatment.

What is the number one thing I hope you all take from this entry?

Treat Every Day as if it Has an EXPIRATION DATE!

by Shaunna Tafelski

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