Monday, September 23, 2013
Tomorrow I am scheduled for what will hopefully be my last chemotherapy infusion. Almost six months of treatments and, hopefully, my last one is less than 24-hours away! I say "hopefully" because I do not yet know if I am in remission and will not know until I have a PET scan, four weeks later and the course of care going forward weighs heavily upon the results of that scan. The waiting for the test to determine if the cancer is completely gone, will likely be the hardest part of the entire ordeal. My body will slowly recover from the toll that chemo has taken, but my mind will be anxious and fearful of the unknown. Now, during the course of my therapy I feel as though I am doing all I can to destroy the cancer, but after Tuesday when I am no longer receiving active treatment, the fear and worry will set in. "Scan-xiety" is a very real part of recovering from lymphoma as scans are scheduled at regular intervals during remission than gradually spread out until the five year mark- a major milestone, I already have my sights on. During the course of the wait, I plan to combat the worry by staying busy, regaining a normal level of activity, staying positive, enjoying time with family and saying lots of prayers. I have a couple of girls getaway weekends planned, a few dinners out lined up and some fun events to look forward to, but will wait until after a clean, cancer-free scan to let the real celebrating begin...
Thursday, September 19, 2013
At the time of my diagnosis the cancer was present in two quadrants of my body; it was stage II. It had affected lymph nodes in both sides of my chest, my supra-clavicle region and possibly my neck. During the initial staging, an A or B distinction is also allotted. "A" signifies you are not yet symptomatic, "B" means you are experiencing symptoms of the disease and therefor it is generally more advanced or aggressive and requires more treatment. I was a B. My cancer was stage IIB. I had cancer and I had symptoms. I was not in denial about these symptoms, I was not afraid to get myself to the doctor, I was not nonchalant about my health. I was concerned, I was proactive, and I was thorough. Despite all this, it still took over two years to get a diagnosis. Two years that the cancer was growing inside me. I experienced my first night-sweat in June of 2011. I remember it well, waking in a panic, waking my husband, drenched to the core, having to change the sheets- talking about it with my neighbors the next morning as we gathered on the street, sipping our coffee and watching the kids play. In perhaps my over-sharing, I was reassured it was normal, many of my friends had night-sweats on occasion. And I was relieved until it happened again. This time, as any concerned mother of five with slightly hypochondriatic tendencies would do, I googled my symptoms on WebMd. I read the ten page list of possible causes, everything from "completely normal part of aging" to "Leprosy", however the one that jumped out at me was Lymphoma. I shut down the computer and called my primary care physician. She examined me, was not concerned but ordered some tests to help relieve my anxiety. When everything came back normal, I was temporarily relived but as the night-sweats continued at random, so did my concern. I returned to my doctor who, at a loss, suggested it might be hormonal. I went to my OBGYN where I had more tests, then followed back for more tests. With still no answers I went to Endocrinologist, who specializes in tracking the function of all the bodily processes that contribute to sweating. I had several appointments and many tests, blood work, 24 hour fasting tests, and 24 hour urine tests. I checked back in with my primary doctor during this time and had a chest X-ray. Everything came back "normal." Perhaps it was stress or anxiety I was told time and time again, I did have five kids, including three under 3 years old. Maybe I was stressed, and these sweats were my body's way of working it out? I thought I would tackle the stress, I hired a babysitter more often, worked out five days a week, took yoga classes and even enrolled in a course at MGH on "Utilizing the Relaxation Response." However, I knew my body, knew my mind, knew that something was not right so I pushed on, I got a second opinion from a Primary at a Boston Hospital, a third at a homeopathic practice. When nothing turned up, and still feeling something was not right, I returned to my primary, who at my urging finally sent me to a Hematologist/Oncologist. I thought if a Cancer Doctor says it is not indicative of anything and not to worry then I will I listen and move on, recognizing this is just an unusual, sometimes inconvenient symptom, but something I can definitely live with. I just couldn't live with the worry. Once again everything checked out fine. I thanked God that I did not have cancer and carried on with my life until I soon discovered a hard nodule in my neck. It was small and hard, but after a week when it did not go away, I went to my Doctor. She told me it was certainly not lymphoma and to follow up in a few months time. I went back for the follow-up and mentioned a cough which was waking me up at night. She attributed it to allergies and suggested a humidifier. She recommended yet another follow up and if the node was still present in three months then she would send me to an ENT for a biopsy. Well, like any concerned mother of five with slightly hypochondriatic tendencies, I did not want to wait three months for a biopsy so went ahead and made the appointment with the ENT on my own. I told him of my symptoms, he examined me but did not find the lump concerning enough to warrant a biopsy. I returned in six weeks for a follow-up with the ENT and the nodule was still there but he was still not concerned so I tried not be either, after all I was feeling fine, working out five days a week, teaching dance classes, chasing around my kids and getting six hours of sleep if I was lucky. Could I do all this if I had cancer? The end of February I had my regular annual physical and was declared "the picture of health". Hard to fathom that at that time, the upper half of my body was filled with cancerous cells. After all those many trips to many different doctors it would only take one trip to the Emergency Room less than two months later, and one CT scan to discover what was hiding on the inside. Alone in hospital bed in the middle of the night I found out about the enlarged lymph nodes pushing on my lungs and heart. I had stage IIB cancer.
I choose not to think about what if it was found earlier?
I choose not to think of how it took two years and managed to reach stage IIB.
Instead I choose To Be.
To be in the moment.
To be happy.
To be positive.
To be forward thinking.
To be here everyday...
Thursday, September 12, 2013
Cancer has changed me in ways I never imagined. I think back to the person I was in the spring, navigating an over-scheduled calendar, reconciling baseball practices that overlapped with soccer games, arranging playdates, teaching ballet classes, driving carpools and checking off the grocery list. Overly concerned with keeping the house clean, I nagged the kids to put away their shoes, keep their toys in the playroom and their backpacks out of sight. My biggest complaint; not enough hours in the day to get the laundry put away, my biggest pain; a nagging case of plantar fasciitis which was hindering my running schedule. How quickly that pain in my heel dulled when I awoke from surgery, unable to move, fighting to keep a cough at bay as the pain ripped through the stitches inside my chest. How trivial an immaculate house seemed as I spent a week in a sterile hospital bed not allowed flowers to brighten the room for fear of introducing foreign germs. How wasted the hours spent cleaning and folding leading up to my hospitalization seemed when torn away for my children for seven days, recovering from surgery while they were out on their school vacation week. How petty my stress over how my boys had performed in tryouts, and worrying if they would have to miss a soccer tournament to make a hockey game, worrying did the girls have new matching outfits for Easter, and bows and cardigans, worrying if I had completed enough crafts and set out enough decorations to impress at the holiday gathering? How quickly these stresses fade while waiting to find out what kind of cancer you have. How quickly the five different colors of ink which marked up our calendar, blurred together while waiting to discover my prognosis and wondering how many more calendar pages I would be able to turn and if I would have a lifetime to celebrate those carefully circled birthdays and highlighted dates of recitals and play-off games.
Cancer has changed me.
There are the physical changes; new scars- one across my ribs, a smaller one on my stomach and this beauty which has left me still without feeling across much of my back, all from my surgery in April.
Then there are the two incisions on my chest from the surgery implanting my portacath and the noticeable bulge under my skin, evidence of the metal disk resting just below the surface.
There is hair loss. I have been slowly shedding since a month into treatment and with the amount of hair left on my pillow in the morning or the amount found in my hair brush after a single use, it's a wonder I have any remaining at all. I now understand why many patients elect to shave their heads before treatment begins to avoid the heartache of watching strands fall to the ground as your part widens and the paleness of your scalp peaks through. My hairline has receded and I never thought I would be the first in my family to inherit my grandfather's male-pattern baldness. My eyebrows are barely visible, elongating my forehead and distorting the familiar proportions on my face. Then there is weight gain. While I thought chemotherapy would lead to weight loss from the nausea, I was surprised to learn that quite the opposite would be true. A twenty pound weight gain is the norm for females my age going through chemotherapy, and unfortunately this has been the case, due to the steroids, the fluids and lack of strenuous exercise (and let's be honest- those delicious meals being delivered every night. If someone spent the time making me and my family a yummy dinner and dessert- damn right I will take the time to enjoy it)!
Being diagnosed with cancer has changed the way I conduct myself as well. I have become inclined to say "yes" more. Yes, we can go out for ice-cream again tonight. Yes, I will watch your dance show in the living room. Yes, I will watch you perform your magic trick which I taught you and yes I will pretend to be astounded as you pick the card I was thinking of. Yes, I will read one extra story. Yes, I will read it again. Yes, you can sleep in our bed. Yes, we can eat dinner outside, yes, we can eat it up in the tree house. Yes, you can wear that, yes, I know it's a costume. Yes, I will come sit and watch the movie with you, and yes, we can eat popcorn in the good room. Yes, I will walk with you to the bus stop. Yes, we can play Monopoly, yes, I still hate board-games. Yes, I will paint your nails, yes, I will let you paint mine. Yes, I will try and do a cartwheel. Yes, I will pretend to be the baby in your game of house. Yes, I will hold your hand and yes we can skip down the street. Yes, I will wear the painted pasta necklace you made me while I go to the store. Yes, I will join you in the water for a swim, yes I know it's cold and yes I do know how to swim! Yes, you can take the cushions off the couch to make a fort, yes, I will help you make it. Yes, I will lie next to you and hold you until you are fast asleep...
Yes, let's go away someplace we've never been. Yes, let's go to a yoga class together. Yes to a girls weekend away, yes to date-night in. Yes, lets meet for lunch, its been too long...
This diagnosis has given me the strength and perspective to say "no" more often as well. No, I won't be able to make that meeting after all. No, I won't put away all the laundry right now, no I won't bother sweeping all the floors. No, I don't have time to listen to you complain. No, I won't give in to negativity. No we don't have to leave yet. No, no you don't have to go.
Cancer has a way of breaking you down to a point where you finally understand what is truly important. It has given me a greater appreciation for life; the people around me and the beauty in the everyday.
While chemotherapy can cause vision problems, it has helped to give my eyes new focus. I notice more around me; the shape of a cloud, the hue of the sky, the call of bird, the delicate perch of a bumble bee on a flower, the sound of the wind whistling through the trees in my yard, the shape of the moon, the texture of a sunflower stalk.
I have become a more perceptive observer of my children, noticing how many times my four year old says "um" in sentence, how her twin moves her fingers in excitement. I note my son's new callouses from climbing and the flecks of green in my oldest's hazel eyes. I notice how my littlest circles her feet like I do when falling asleep and clings to her blanket with the same hand the whole night through.
It has given me a more profound appreciation for all the good around me. I have become the recipient of so much good will from others that it makes me want to be a better person. After constantly bombarded with stories of injustices and all the wrong in the world, it has taken through going through something like this to recognize how much good still exists.
It is truly humbling how many people have reached out to me. How many people were compelled to write, email, call, send help in anyway they could. I have been touched to hear from people I didn't think would remember me after so many years, so many people who are friends of friends, and many I will never get to meet. I am amazed how the initial outpouring of support has been followed up by continued expressions of concern. Knowing I am in others thoughts and feeling the power of their prayers has given me strength. Having others share their own hardships with me and inspiring me with their stories of victory has given me courage.
I recognize we all have our battles, many struggling more than I, and we are all just trying to do our best with the circumstances we are given.
Now, I am more determined than ever to do my best; in fighting this disease, in being a better wife, daughter, friend, in following through with my dreams, in helping others, in raising my children. I am not a saint, I still look forward to my children's nap time everyday and will be clicking my heals when I can leave them at school for a few hours during the week, but, I will make every attempt to appreciate the time we do have together, thank God for their smiles, the ability to make them laugh, to feel their love. I am not a saint, I still roll my eyes in line, beep my horn at slow drivers, love me some gossip as much as the next gal, but I am more careful when passing judgement, knowing we are all facing our own hardships. I am not a saint, I still want time to myself, make demands on others and like things done my way, but since my diagnosis I'm more ready to help, go out of my way, and to give of myself.
Just recently, at an outdoor event with my sister and some friends, a young man collapsed before us. A crowd stood around gasping and staring as he began to convulse then lie motionless on the ground. Without thinking I jumped into action running over to him and his girlfriend who was kneeling at his side. I checked his pulse, when I was informed that he had been stung by a bee just seconds before. I yelled for an epi-pen, began barking orders, instructing someone to call for help, pleaded for a doctor. Soon a friend produced an epi-pen and handed it to me. Everyone was counting on me to help save this man's life. I removed the cap on the epi-pen then hesitated as I realized he was wearing jeans, obscuring the place on the thigh where the shot of epinephrine is to be administered. Not certain the injection could go through the thick denim, I told his girlfriend to unbuckle his belt. She sat crying and helpless, seemed to be in shock, so I began the task myself. Here's the embarrassing part; just as I got the man's pants unfastened and pulled down revealing his boxers, he suddenly regained consciousness, sat up, out of it, but fine. Turns out he didn't really need to be saved after all. Although an awkward few moments transpired as the man who had just come to was filled in on what had happened, why I was kneeling beside him and why his pants were undone, he and the girlfriend were most thankful that I was there and more than ready to help. Before my diagnosis I likely would have been sitting on the sidelines with the rest of crowd but now feel a greater urgency and purpose. I am compelled to be that person who goes out of there way, apparently, sometimes whether needed or not...
Earlier this week while out for a jog, elated to be running again (barely keeping pace with the mailman, who was walking and delivering mail), I came upon a tow truck with a white car bearing a handicap license plate, already loaded up on the platform of the flatbed truck. A woman with two prosthetic legs was attempting to climb up the ladder and get into the passenger seat in the trucks cabin. I saw her struggle as her legs twisted beneath her, missing the step and getting caught under the medal rungs. Using her arms she continued to pull herself up holding on to the handrails. I was tempted to look the other way as not to 'embarrass' her, justifying to myself that 'she wouldn't want any help', I would 'hurt her pride'. But after a few months with my own health struggle, I know how much those offers mean. I appreciate the smallest gesture, a nod of understanding, anything to lighten the load or help ease the pain. I now know what the right thing to do is and I am more inclined to do it. I walked over and asked how I could help. She was in quite the predicament, legs not able to bend to fit in the truck's compartment and a seat which couldn't be pushed back. I supported her foot giving her some leverage, and guided her legs as the driver pulled her hands from his seat. She finally made it to the floor of the cab but couldn't lift herself onto the seat from that position, but she was not giving up. I climbed up onto the steps and helped pull her up and into the seat. I untwisted her legs as she sat back, utterly exhausted- we were both exhausted, it had taken everything we had. She was out of breath as she whispered, "Thank you, I'm not sure what I would have done." I continued on my walk, feeling the fresh autumn air on my face, I just wanted to scream, I'm alive, I have two legs, and I am walking today- Thank You God.
I am no saint, I loose my patience, I say things I don't mean, but I now take the time to talk to God more and thank Him for the gifts in my life. And there are so many, and sometimes it takes going through something hard, something sad, something that challenges you, something that makes you question, something scary, something like cancer to make you realize that .