Times are changing and flying by fast. Life has not allowed for traditional cards this year, but I think of you all and wanted to send a holiday message, this year on the computer. My computer has been my regular companion even more so through this past year. It has allowed me to keep in touch with everyone easily. First, thank you so much for all of your emails, notes, thoughts and well wishes this past year. They have been very encouraging and meaningful. Life is going on as normal as possible considering all the new things that have become a part of our lives. The boys have adjusted well and are in very good spirits. While school is in, they have not come to treatments with me, but do on occasion. They are not fearful, but rather bring smiles to the hospital staff and other patients. They are very positive and have really "stepped up" this year. We are very proud of them in all they do.
I continue with my treatments and it has become my "job" as it consumes much of my life now. I am gaining strength and some energy back and I have been handling my treatments fairly well. We have a great support system which remains steadfast. We are fortunate. Bob has been able to find extreme latitude and support from work and at this point is returning to some travels as his job demands. We are remaining positive and looking forward to a new year of life and health. It's all about attitude! Here's to you and yours! May next year be a GOOD one!
--
Laura
Ralph Waldo Emerson - “a friend may well be reckoned the masterpiece of nature”
Well, here I go. Finished my first week, well, half week of radiation treatments. Okay, 3 days anyway. Starting the routine of things. A friend came with me the first time, but I drove myself the rest of the week. I realized it's the first time since May or June that I've driven anywhere myself. It feels good to have some energy back. When I show up, my buddy, the valet manager, is glad to see me. He shouts in fondness, "she's my favorite one" and gives me a giant bear sized hug as he momentarily neglects his work. He treats me with respect and we have a good time teasing and joking. It's good to come into the front door of the hospital with a smile. They do their jobs well, it makes showing up pleasant. I have an ugly "job" to do and the staff cause me to look forward to coming to the hospital. The valet manager is happy to see me driving myself. "You look good kiddo". Ironically, my father says the same thing when he sees me. "I'm just so happy to see you, I mean I'm not happy to see you here, but I'm happy to see you doing better". He stumbles to simply say he is glad to see me but not for why I am there. He takes good care of me in and out the front door. I could not simply park in the lot anymore, as showing up like a sort of celebrity begins the day with a brighter side.
I walk in quick stride down to the Center. I have not had a good pace or upright posture in a long time. It feels good. I feel stronger. I'm working hard on what health I have control over. I walk, I lift weights, I stretch. I brought my own robe today. I just decided I'm going to go in with some style and comfort. I spent two days in the oversized ugly hospital gowns. Today I showed up in my old Victoria's Secret cotton robe with bright bold red poppies. Of course I was greeted with smiles and surprise. "Well, look at you, fashion plate!" "Are we going to be seeing more of this or is this just a Friday special?" The technicians support me and we all agree, "why not?" Might as well be comfortable and have some fun. They seem surprised though and admit to me that I'm the first one they've seen to bring my own attire. "You may start a trend!" I figure, I just don't care and I'm going to do it my way. I may stand out, but it will be for all the right reasons!
The treatments are going quickly now. Getting the measurements done was grueling. It was long and difficult to hold such uncomfortable positions. My range of motion is extremely poor and I can barely lift things with my left arm. I ache now, but I will manage. I need to continue working out. The stronger I am, the better I can deal with the radiation and chemo. Someone is coming with me one day next week. She insists I cannot do that much by myself. I have both chemo and radiation in one day. This weekend, I hope to forget for a moment. Holiday baking is planned. I had hoped to be finished by now, but I ended up at the hospital instead. I became so sick from the treatments I needed to go back to the hospital. It will be nice to spend some time doing normal things that don't revolve around being at the hospital. It is so much. This is the long haul. Some have slowly fallen away. Neighbors caring efforts and attentions have quieted. My husband remains by my side. A few close friends are still here. My family is still here. I am tired, but I am still fighting. I'm trying to find my smile. I'm trying to find my strength. Just getting up and getting dressed and putting make up on helps me feel alive; a bit of myself. I don't honestly feel beautiful anymore, but I feel like if I go through the motions of putting myself together with clothes and make up, I might feel more dignity. It was my routine before. If I put sweat pants on and don't bother with a little make up, I feel like I'm giving up.
I can't let it take over. It tries. It tries. That's why I bring my own robe to treatment. It puts a bright side on something so depressing. I will find a way to put a little class to this experience. Why wait for the party? I will make it a party now. I go into this knowing that looking back is just as much a part of life as looking forward. My robe of color represents both.
I thought I had a week off from going down to the hospital. The radiation department called me yesterday with the news they needed me for further measurement so I went down today. It was grueling to lay perfectly still on a hard tray with my arms above my head. Unbelievably, lying perfectly motionless in an unnatural position is quite painful and difficult. I have not yet recovered enough from surgery and my arm is in pain. It is still atrophied somewhat. I took medication before heading to the hospital. It enabled me to endure the half hour on the table. It's tough because I have a long drive to the hospital which is about an hour away, so I really can't take the pain medication I need to, so I have to just tough it out. I'm hoping to be able to drive to my treatments as I need to go daily. I'm still doing chemo which will overlap a few times. I think on those days I will need to have my husband take the day off of work. I am in pain and I'm tired now as I write this, so I will keep it short. Others say that doing this part of the treatment will be much easier, but I have my doubts. Already I know it feels like this part will indeed be hard for me personally. I will be awake, aware of my surroundings and in pain. I will be going daily without company and it is a long drive. It will be a long day, everyday. I will drive down to the hospital as soon as my kids go off to school, and I will be getting home just before they return. I must start next week. No breaks for 6 or 7 weeks. I'm already tired before I begin. I have been doing everything back to back and I'm loosing steam. I'm loosing momentum. I need encouragement. Winter is dark and cold.
The days are getting shorter, the weather is turning cold and the holidays are here. It's time to get the decorations out and pump up the kids excitement. We will soon climb the hill and pick out a tree to cut down and bring home. I look forward to the smells of baking and extra time with my family. It has been a good time of rest, but it will soon become busy again.
I continue to recover from surgery and gain some energy and strength back. There is still a bit to go to gain all my strength back, but it will take time. I have returned to my chemotherapy treatments, but now I will go once or twice a month instead of weekly. This will continue for a year. These treatments may be tough on my heart, but otherwise they will be less harsh than before. My hair is growing back. My fingernails are growing back. I am feeling better.
My newest commitment will be my daily radiation treatments for about 6 weeks. I will begin with these in about two weeks. I have this much time to continue recovering from surgery and work on getting movement back in my arm. Time to get on the treadmill!
Nearly 70,000 Americans between 15-40 are diagnosed with cancer every year. Unlike every other age group, there has been no improvement in the 5-year survival of young adults since 1976. This is not OK. Change the world and support the I'm Too Young For This Cancer Foundation in it's life-saving mission to improve early detection and survival rates for young adults affected by cancer. For more information, visit http://i2y.com.
October was the month I had a break from my treatments to rebound and gain strength for surgery. Flu season came early this year. Having a weak immune system and young children, it was a bit of a challenge dodging the flu bullet. Surgery got postponed as I did end up with a sinus infection. I was concerned as my oldest was ill the previous week. I am a mother first and ill with cancer second. Nothing stopped me from caring for my sick son, even when my own white blood counts were so low that I couldn’t sit and hug him. I remained at home avoiding public places and my family was diligent about washing hands. My bigger fear was becoming seriously ill during a vulnerable time.
I am one to take charge of things right away. Once my husband came home from work and found me with a 101 fever, he began to push fluids and care for me. Doctors were called and put on alert. I got blood work done to get a baseline to watch before surgery. It did not take long for me to recover.
Life must go on for my family. We cannot live in a bubble. I was ill during Halloween this year. I wanted my boys to have fun and go trick-or-treating. I wasn’t able to take them and watch. They are children thank goodness. They didn’t notice what I missed. Another “thing” for the list of things cancer gets in the way of, in a woman my age with young children. It is something else that is taken away. No one will know but my husband how sad I feel during these stolen moments of motherhood. My sons will continue with day-to-day life. I will find a way to let them go on with their childhood. Only I will understand the impact of not being able to share in these moments with them. There will be next year. I will be well next year.
I had my surgery last week to remove my tumor and cancerous lymph nodes. Surprisingly, I felt very calm and ready. I was very nervous for my minor surgery to install my port catheter, but then again, that was a first for me. This time I knew I was under the excellent care of the same team and surgeon. Just their positive attitude in the pre-op area was enough to lighten and calm my spirits. The doctor’s and surgical team’s confidence levels gave me the assurance I needed. I knew this would be the next big step in getting my life back.
Recovery was a bit difficult for me as I was in a good deal of pain when I woke up. All was done to give me comfort and manage my pain. Something I have always struggled with has been my pain threshold. In the past, others have not always believed how much it takes to manage my pain, but this team listened and made every effort to give me comfort. I was checked on constantly and cared for with compassion. If you are a medical professional reading this, it makes such a profound difference as a patient to be cared for in this way. I have been in a hospital before, laying on a gurney, as nurses talk over me like I was a piece of meat, not present as a human being. I have been in the presence of a doctor in the past, who treated me without regard to my dignity or intelligence. I don’t want to feel like that again. Under this team, I am offered choices which I am free to take my time to make. I am able to speak for myself and respect is given to my personal situation. My family is allowed to be present. I have not had to go through any of my treatments or surgeries alone. It has made a tremendous difference that my support system has been allowed to be present every step of the way. During those times I am not feeling well or able to think clearly, they have been able to step in and listen and advocate for me.
My surgery was extraordinary. My surgeon met my family in the waiting room with a smile and the news that she couldn’t find any more cancer. The lab reports confirmed the eradication of my cancer.In medical lingo: my "margins" were clean. This means the area surrounding the tumors and what she removed showed no more cancerous growth.
It was my doctor’s honesty and caring advice that helped me arrive at the decision that was right for me. The treatment choices have been hugely successful and the positive attitude maintained by the medical team and my personal support team has made a difference. My family and friends have supported me without fail.
I can find the kindness in people’s eyes and feel their genuine concern. It is the genuine heartfelt assistance of those who truly know me and care for me that moves me. It is the unconditional love by those who care for me that expands my soul. My improved health is the result of those around me truly working and helping. It is the collective positive energies, talents, skills, prayers and good-wills of those involved in my life that heal me. It is the hard work and research of my medical team that deserves the credit and praise. It is the commitment and devotion of my family and friends around me constantly encouraging me, caring for me, working hard for me to keep life going. They are the unsung heroes in my heart. I am motivated to keep fighting by them. I avoid depression because they know I need them to keep my smile. I work hard at what’s before me because I will not become the victim of my circumstance. All who love and know me, support my outlook and keep me from falling off of that straight line. It is my circle of caregivers that love me and ask not for recognition or accolades. I am strong because they are strong. I am alive because I am not helpless. It is their commitment to me that astounds me. I have a will to live because I am loved and I love them. It is they that deserve praise and thanks because they chose to share this awfully hard journey with me. It is this kind of love that fosters life.
We had a unique opportunity to experience the inside of the pathology lab at the hospital today. My boys have been asking questions all along trying to understand what has made "Mom" so sick for so long. We arranged through my doctor to meet with the pathologist where my diagnosis began.
Today the boys got a day out of school to personally meet with the Director of Pathology at my hospital and tour the Pathology Laboratory where no one is usually allowed to enter.
It was truly an amazing experience for all of us to witness what goes on behind closed doors in the closed off basement of the hospital. It felt like something out of a movie. The doctor first spent a good deal of time with us in his office with one of the most powerful microscopes I've ever seen. He taught the boys the difference between healthy cells and cancer cells and then they had the opportunity to see with the microscope what my cancer cells looked like. At 7 and 9 they learned about mitosis and how cancer cells divide uncontrollably and invade surrounding tissue. He was careful to point out that everyone in the lab treats each microscope slide as a real person and not just some cells and some dye. Behind each slide is a real person with a story and it is up to them to interpret correctly what those cells are doing.
We were able to tour through the entire pathology lab and meet with the doctors and technicians to see the process of identifying disease from beginning to end. We saw the hundreds of tissue samples from biopsies and the process of making those samples material to be studied and diagnosed. A far more complicated process than we all imagined.
I just wished another friend of mine a happy 40th birthday. It reminded me of what I got for my 40th birthday just this year. Breast cancer was the furthest thing from my mind when planning my life at this age. I’ve been generally healthy and enjoying life watching my young boys grow up. I haven’t lived hard, I eat whole and organic foods, I rarely eat out at restaurants (never fast food), I exercised regularly; but all of that didn’t prevent me from getting cancer. Research is going on right now that is looking at how and why women get breast cancer and I’m a part of that study. Some say being overweight may trigger something; I’m not overweight. Some say an unhealthy diet high in fats and sugars may trigger something; my diet is free of processed foods and sugars with occasional low fat meat. Genetics is another place that is being looked at. I have no family history and I was tested negative for that magic breast cancer gene everyone is talking about. What is the smoking gun? Perhaps there isn’t any one smoking gun. Sometimes people just get cancer for some reason. I have been asked so many times why I think I got cancer. Who’s to say? What’s the difference now? Why look for blame? I have it and now I need to fight it.
Before my diagnosis, I had no clue someone healthy and young like myself could get this disease. It was the last thing on my mind to check for on any regular basis. Now as I’ve turned 40, I am finding out how many young women even younger than me get breast cancer. The challenging thing is that when we have even the slightest of symptoms, we’re often told not to worry, “you’re young”, “and it’s probably nothing to worry about”. So we go on with our young busy lives never letting it cross our minds that we could have breast cancer growing inside. I’ve complained of an inconsistent odd pain in one side of my chest for the past 10 years. I was told at one point it was because of exercise and given medication for asthma. The “asthma” miraculously disappeared one year, but the tenderness remained. Once my kids were born, breastfeeding on one side was extremely painful. I was told that was normal and to feed more on the painful side as that would possibly relieve the pain. It didn’t. As my kids got older, hugging them at times was painful. I’ve done self breast exams all these years and never felt a lump. My doctor was told of my tenderness and occasional sharp pain out of nowhere, but for years, she never felt a lump either. I no longer have that doctor. Anger and blame can be felt toward that doctor, but what’s the point. Even only 10 years ago, doctors were not instructed to think of looking for “breast cancer” in someone so young. It too has been the last thing on their minds. Even currently doctors are questioning whether instructing young patients in the practice of self exams is useful.
I’ve since learned that my experience is all too common. Young women do get breast cancer. 1 in 10 women with breast cancer are under the age of 40. Young women are more likely to be diagnosed with more aggressive and later staged cancer for many reasons. For one, because our tissues are young and dense, we are less likely to “feel” anything early on. (I still was unable to feel my lump until it was over 2” in size.) The next reason is one that has to change in the medical community as well as the community at large: our complaints and worries are not taken seriously. And finally one other popular reason is simply lack of early detection methods and knowledge in young women.
In fact, although breast cancer is more common in older women, about 13,700 women younger than 40 years of age will get breast cancer this year in the United States. I always thought breast cancer was an older woman’s disease too. The medical community tells you to get your “first” mammogram starting at age 40. I got mine at 39 and then it was too late. Even as I went through my testing process, my mammogram was unable to identify my large golf ball size tumor. I was given an ultrasound next which identified enlarged lymph nodes under my arm. It was the next thing, a biopsy that finally gave a positive diagnosis and visibly measured my tumor. A mammogram is nearly useless, but still done initially because that is the order of things currently.
Special Circumstances
Women under 40 who get breast cancer face unique challenges as they fight the disease. Most find less information and often less support than older women with breast cancer. “Your average 30-something doesn’t know another 30-something with breast cancer,” says Ann Partridge, MD, an oncologist at Dana-Farber Cancer Institute in Boston. “It’s true that most of the research studies in breast cancer are done on older women, but since the discovery of the BRCA genes, we are learning more about breast cancer in young women.” This may be true for some and I’m glad such a test exists, but I’m worried that young women are being told that if they have a strong family history of breast cancer to go get this genetic test, and if they have a positive result, they have a higher risk. I hear of so many stories of young women who meet that criteria test positive and then get double mastectomies as a preventative measure. While I don’t consider anything wrong with a woman’s personal decision to do what she feels is right, I do feel many young women are being misinformed or simply not informed at all. Again I for example have no family history and tested negative for that gene. While October has been washed in Pink this year, the message is still predominately that this is an older woman’s disease. The infomercials that do exist primarily target women over 50.
Young women with breast cancer are truly in a unique position. A cancer diagnosis can feel particularly disruptive at an age when a woman may be just starting out in a marriage or relationship, building a career or starting a family. “Younger women are more likely to be at a stage in their life when things like sexual functioning, beauty and attractiveness, fertility and family planning may be of the utmost importance,” says Partridge. Young women who plan to have children in the future confront difficult challenges regarding treatment. Both chemotherapy and hormone therapy for breast cancer can affect the ability to have children. Younger women also have a longer time to have long-term complications such as early menopause and osteoporosis. That said, there are even more challenges younger women face that are social and identity based.
While I consider myself lucky to be past the point of having my children, my late stage diagnosis makes me wonder about when this all really started and went on undetected. Had I been diagnosed at an earlier stage of my cancer when I began my complaints, it is likely I would have received a diagnosis around my late twenties to early thirties. Now I simply feel "stuck in the middle". I am now turned 40, above the cut off for the "too young for cancer" group, and too young for the "typical breast cancer age group". Even with breast cancer, I feel like I don't "fit in" anywhere.
Breast cancer was the last thing on anyone’s minds when I voiced my complaints mentioned above years ago. My unique challenges now exist for my treatment. I rarely see another woman my age when I walk into the waiting room of my oncologist’s office. Most of my roommates at chemotherapy spoke of their grandchildren. At first I wondered if I’d get to see my sons grow up let alone ever see any grandchildren. I had my children after 30. They are still young now. It was upsetting to think such thoughts, but my fears were realistic. The later the diagnosis the grimmer the prognosis. At first their self-pity made me feel angry. Although cancer is cruel and unfair for anyone to experience, they led twice the life I’ve led. I allowed my emotions to flow, but then I knew mind over matter now was of utmost importance. All around me would follow my lead. If I was depressed and worried, my children would become depressed and worried. I should know more than anyone, that much of the time, denial is an unhealthy and disruptive mechanism. I never knew until now, a certain amount of denial can be a powerful tool in fighting cancer and maintaining a positive attitude.
Chemotherapy, Treatment and the Young Woman
It is understood that young breast cancer patients often have more aggressive disease than older women. Because young patients can usually tolerate more intense chemotherapeutic drugs, they tend to receive particularly toxic regimens.
Though this is true, the experience was not something I could prepare for in my mind. In the beginning I felt very alone in the waiting rooms and chemotherapy rooms. I was at times, mistaken by other patients as being a daughter waiting for my mother. “How is your mother doing?” asked by a stranger, met with the look of surprise when I was the one who got up when called wearing my plastic ID bracelet. Most of the time though, I was sitting alone with my husband in the waiting room apart from all of the other much older patients.
I also felt frustrated that my body went downhill so fast during my chemotherapy treatments. I watched as most of my chemo roommates came and went walking on their own and driving on their own. I soon realized that I was being given a very aggressive treatment unique from those “others” I watched walking in and out. I quickly got to a point that I needed a wheelchair from the car to the treatment room. I could not walk down the hall on my own strength. Chemotherapy had beaten my once strong body down to that of dependent and weak. I went from riding my bike 40 miles without effort, lifting weights and running with my dog; to feeling breathless getting out of bed and walking to the kitchen.
Chemotherapy also took my social life away. I could no longer be myself, as much as I tried. I became extremely dependent upon everyone around me, including my own children. I am supposed to be there for them, not the other way around. I was met by some with discomfort and coldness when I did show up wearing a scarf on my head. I was immediately excluded from certain groups because they pitied me or questioned my ability. My usefulness was taken away. I realized that many in my age group are not used to dealing with someone like me and so they don’t know what to say. They don't know that it is just okay to behave the same way around me before I wore scarves.
Despite the many challenges, I found strength from deep inside and went on each day attempting normalcy as much as possible. I knew in my mind that if I did not dwell upon the things that were destroying my body and fogging my mind, I could rise up and fight to get my life back. This has been the largest challenge of all. My diminished abilities and everything I see in the mirror, and feel in my body only remind me of what’s there getting in the way of everything. The last thing I can’t do is feel sorry for myself. This is not a part of my nature.
If I can do anything it is to share my feelings and experience to let others know this is real and common for everyone like me. This is a disease that does not discriminate. It is not something to be ashamed of or hide from just because it is “breast” cancer. You’d be surprised though how many still treat it with shame and can’t even say the words “breast” or “cancer” out loud.
Not Alone
It has been so important to have a good support system. They don’t tell you how critical this will become in your life. I just assumed we’d figure out how to get along as we always have. When things go wrong, we have always been private people retreating and coping on our own. I assumed we would just “disappear” for awhile like those movie stars do when the have a baby or a “procedure”! We had no real concept of how much we would really need other people. Being 40 with a young family, career and social obligations, living hundreds of miles away from relatives poses its unique challenges when breast cancer comes along.
We have so many to thank. We have been so touched by people’s willingness and commitment to make life continue to run. Neighbors have manicured our yard all season without asking. Many have been bringing meals. My kids have been cared for when I couldn’t make it home from treatments before school was let out. Most meaningful of all has been the company of those closest to me, making life feel “normal” during a very stressful time.
When you have breast cancer at this age, going through it is challenging enough. You have to endure loosing your mind to “chemo brain”: being forgetful, foggy, inarticulate, tongue twisted, disconnected. Then you have to think of who will take your kids to soccer practice when you can’t drive. Others parents work too and have busy lives, or simply not enough seats in the car. You have to think of how the laundry will get done or how the weeds will get pulled when you were the primary one to do those things. You have to think about how to take care of your kids when they get sick when you’re too sick to take care of yourself. You have to feel the sadness when you can’t play with your children. You have to think of what will happen with your job and your income. You have to think of never being eligible for healthcare or life insurance again. You have to worry about becoming bankrupt with medical bills that insurance won’t cover. You have to not look or feel beautiful for your husband even though he says you are anyway (if you are fortunate to have a husband like I do). You have to endure when your children tell you they miss your hair and forget what you used to look like. Those are just some of the things that have gone through my mind in my personal circumstance.
For others, there are so many other issues. I have come to learn that for many, the disease takes a toll on many relationships and marriages. Many friendships and marriages end. It takes it's toll on a child's mental outlook as the secure world and person they depend upon is not able to be that source of security. It creates a world of insecurity, financial worry and puts a tremendous strain on all aspects of life. Everyone is in a different place in life. Every cancer and experience with cancer is unique. Each challenge: emotional, physical, sexual, relational, financial, spiritual and social is what we all face as individuals with cancer. Remembering we are unique but equally important is key in survival. In facing our challenges, we must find that we do not suffer alone.
I always have a roommate when I go to the CancerCenter for treatment. There are far too many people in this unwanted “club”. As much as I don’t want my cancer to define the moment or even be a part of the conversation, it takes over too much. It is in my way. It is in everyone’s way. I simply want to have a “normal” day, a good conversation that I don’t struggle to put my thoughts together, good times with friends, to be able to play and rough house with my boys…simply…to live.
I struggle to form complete thoughts but those around me understand. It's easier to write than it is to hold a conversation. A good evening of laughter and company is what I crave now. My personality is fogged by my treatments, but those around me take over in doing the things I normally would, trying to hide the additional stress it adds to their day. My husband and my young boys take over the chores of the house and express that they now have an appreciation for the things I quietly do behind the scenes. I feel a pain of guilt that my children must learn such responsibilities so early, but they seem to show pride in learning new skills.
It is ironic that the journey of my cancer and treatments parallel the seasons that come outside. It is the beginning of fall and the leaves are dry and fall to the ground. The color of the grass has faded and flowers have stopped blooming. My skin is thin and dry. My hair has been gone long enough that I’m used to it being gone now. My hands are in constant pain and my finger tips feel as though they have been smashed by a hammer. My nails are yellow and brittle and starting to peel away from my fingers. My eyes are dry and my nose bleeds. If this is the outside of my body, what is it like on the inside? I run out of breath easily and my heart pounds with a simple walk. I feel pain in my chest all the time now. The doctor says she can’t feel the solid tumor anymore, but I feel the ache and the pain it leaves in its place. My breast tissue is deformed as my tumor softens and shrinks in size. My doctors measure me at each appointment and seem overwhelmed and shocked that the chemotherapy seems to be working better than expected.
I continue to go in for chemotherapy each week and it does a number on me. I feel anxious and in a tired fog much of the time. I feel as if I’ve had too much coffee when I’ve had none for months. I go so many nights without sleep. I forget which day of the week it is as darkness changes to dawn. Dehydration is a constant battle. Complaining is not my way, but sometimes I just do. These are the realities of treatment. When I voice these issues, I find I am not alone. My symptoms are what’s “normal” to expect. I find relief in knowing nothing is unusual. Yet, each of my room mates during my treatments seem to struggle in different ways.
I’m tired and feeling a lot of pain, but I just want a “normal” evening of hanging out. I just can’t find a way to be myself. My mind is scattered and tired. I struggle with conversation much of the time anymore. I’m lost. My husband is still with me though. Sometimes I wonder how I deserve this care. I couldn’t be in better hands. My soul is at peace knowing my love is being returned. He is my best friend and accepts me even as I fall apart. Can a friend do anything more giving than that? I realize that fact and feel moved. I am lucky. I have sat in waiting rooms and listened to other women share in sadness how their marriages did not survive their cancer. I see who is by my side through this journey every step of the way. I am surrounded by the love, care and understanding of my family and friends. They in fact are the “unsung” on this long road with me. They do without complaint or obligation. Cancer may take the body of one person, but it takes the souls of everyone surrounding it. It is all consuming at times. Fighting this “battle” as they say has become my “job”. Going to chemotherapy has been my weekly existence. Others continue to remain positive around me encouraging me that it will be over soon. I try not to count how many more treatments I have. One more done, one more to go is the easier mind set.
I walk into treatment without dread focussing on the friendships I have made at the hospital. I look for ways to laugh and use my humor to cope. I see many roommates during my sessions that are there alone. It is quiet and long to suffer through those sessions alone. Having a loving presence at my sessions weekly is the greatest gift I could receive.
Ironically, it has become a place I will miss. Not the treatments or tests, but rather the people who have cared for me so much. Though it is their job, the ones that really care about what they do and the people they care for make a difference. It could be such a lonely and cold ordeal without the people that take the time to help you think of something else. I began my journey by walking into the hospital feeling beautiful. I had my hair, my complexion, my energy, my smile. These people have seen me melt away, but do not offer me the pity I do not want.
I look at each day and I don’t want to waste a moment. I’ve always felt that way, but the feeling is more urgent now. I cherish each day and I struggle to rest when the day is not full. I know rest and quiet are just as important though, especially to those around me like those that care for me everyday. I need to allow those around me to have space and rest.
My oldest son asked to climb in bed with me last night. This time it is not my youngest asking to “snuggle with Mom”. He falls fast asleep quickly. He is peaceful and secure. And even at 9, he still needs his mom simply to be there.
Up before dawn again. A brief time alone with everyone in the house. The sky is beautiful this time of day. My mother used to try to wake me at the beach to see this and I never could get up to join her for a walk on the beach. I fall into that rough category of the population known as “not a morning person”. She used to be so disappointed and would go alone. I understand now what I missed. It is more beautiful than a picture can share. It’s not just the pink of sunrise; it’s the quiet and the cold smell in the air. Even here where I live now in Pennsylvania, away from the ocean, the quiet beauty of the ice on the ground and lining all the trees, the low lying fog, the pink stripes in the sky. It’s fall now. Fall has come early this year. I hear people say this winter will be long and rough. Most of the leaves have changed to a bright color already and it’s been so cold early in the season. It’s so quiet this time of day. I can hear the clocks tick.
Understanding my symptoms of treatment and coming to terms with the side effects is something that only now I can understand. The constant insomnia has been mostly a curse, but also a unique gift of time. My body has become an enemy of the dream world, but the long hours awake at night have given me the quiet time to write. During the day, my fatigue clouds my mind. At times I find it difficult to hold a conversation. I’m frustrated with not feeling like myself. My boys remind me that they miss the “old me” and that they miss playing with my long hair. Still the soccer mom; still trying to look “put together” when I go out the door, still me…somewhere on the inside.
I had one last chemo treatment before I undergo surgery. I will stop for a few weeks so that my body can gain strength and enough immunity back to undergo surgery. My body has grown very weak and my white blood cells and platelets have poor numbers. During this time that the doctors hope I will show a rebound, I will receive shots that are to help bring my blood work numbers to an acceptable level. I will not be able to have my surgery until I am strong enough and my immunity improves. I am told that the shots will cause another set of side effects such as extreme bone pain and flu-like symptoms as my bone marrow goes into overdrive to produce the white blood cells my body is deprived of from chemotherapy.
I'm glad to be getting a break from things for a couple of weeks. As much as I'm glad to not return to the hospital for this time, I will miss seeing the staff. They have all been very caring and good at making the experience bearable. I've remained strong, but it's taken a toll on my body. I also plan to stay home as much as possible dodging the flu bullet. My immunity couldn't be weaker at the worst time of the year. I also have young children in school surrounded by the cold and flu season. Others do not understand my vulnerability currently and it will be a challenge to avoid situations where I am exposed to others who are sick. Neighbors surprise me at the door with concern and kind offerings as they excuse their coughing and say hello.
Chemotherapy, now that’s a word that is melodramatic. More like mini Chernobyl in your body! Yet it’s what is out there to eradicate the cancer cells from within a living body. It doesn't know the difference between healthy cells and cancer cells. It destroys the cells that are growing the quickest, which is the cancer, but also cells such as the hair, nails, taste buds and some skin. It has been a difficult road to undergo this treatment, but it seems to be shrinking the tumor and slowing its growth, which will make surgery easier. It helps me feel like I’m doing the right thing. Those that are near me accept it and quietly watch me from week to week as they see what it is doing to me. The progress of my cancer was so aggressive and fast spreading that it was just too late for me to do anything else. It was on its way to killing me very soon if I didn’t stop it in it’s tracks with something desperate. The later the diagnosis, the grimmer the prognosis. All numbers and ink, I know. Statistics and survival rates are thrown at you in the beginning as you are told what treatments are available to treat your particular cancer. And so for me with later stage cancer, the options for conventional and unconventional treatment dwindle.
I am also learning that my choices of saving my breast vs. reconstruction may not follow a conventional path. My breasts were small and my frame is thin, but my tumor is very large and has had years to stretch my breast tissue out of proportion. If I am to undergo a full mastectomy, I may not have the necessary tissue for a proper reconstruction. I am being told all of my options and risks depending upon the outcome of this initial chemotherapy. I will also need radiation which limits my choice of "healthy" tissue to use for reconstruction. The affects of radiation will change the tissue and I cannot have reconstruction until after radiation is completed, as radiation would deform any reconstructed tissue. In addition, any implants needed would be damaged if subjected to the radiation treatment. The idea of being left with the option of wearing a prosthesis does not sound like something I will feel comfortable. I am already looking into my closet and making a pile on my bed discarding all of the v-neck tops and "cute" dresses that I will never wear again in comfort. I have traded my bras for shelf bra camisoles as bras have already become painful to wear. I had been stuffing my unaffected side to match my "overgrown boob", but now it is a matter of comfort. This is the season of sweaters and loose fitting clothing and so I am able to hide my deformity for now. I know when summer comes, I will mourn the loss of being able to wear bathing suits and tank tops. It may sound like a simple thing, but appearance and comfort will now become a battle less to do with vanity. I have decisions to make. Others who have survived breast cancer are telling me their stories and what they have undergone with reconstruction. I am not ready to hear this part. I am carrying my hidden dragon and it continues to ravage my body and mind. I am tortured by the thoughts of being forever changed. Peace comes in the simple things of looking upon the pink skies of pre-winter dawn. I can only handle today. Tomorrow is too far away.
I have time to myself again. I have a lot of time to myself now. I just got off the phone with a concerned old acquaintance. It was a rather exhausting phone call. Clearly she was uncomfortable with the news of my illness and wanted in some way so much to help, despite my protest that those who are here to do those things are already in place. It was an odd phone call. Questions and concerns solicited by this person clearly fishing for more information to report back to a gossip circle. A person feeling compelled to offer me pity, only to be surprised that I am not wallowing in self pity. Most of the kind of help offered by all these concerned people is self-serving. I’m not talking about everyone, just "these" people that suddenly claim a sort of friendship in my time of "need". I did not exist until this happened, and now "these" people want to help because it’s what makes them feel good, and it helps them not feel so bad about me. I am not the kind of person that likes this sort of attention and I do not like sharing the intimate details of my health in order to give a few something to do. A phone call out of the blue. After this, I probably will never hear from her again. These are some of the people I was fooled by and attracted to in my youth as I searched for safe friendships in my insecure ullage. They wear two faces. Now these people seem like the brittle colorless straw found in the horse stall. Sometimes sweet enough to chew on between your lips; other times covered in shit.
Okay, I'm the sick one here. Wait to hear more before you judge me. She being many layers outside my social circle voiced feeling sorry for me. I mean she really put it out there. "You poor thing." "How can you go on? I would just be so depressed if I were you!" Not really there to listen or support me, but rather to feel good about being helpful. Admonishing me for not being utterly depressed. I must be in denial. Feeling awkward about discussing my illness, yet this was the sole purpose of the call initiated by her. She asks about my illness, yet stumbles over her words. She is inappropriate and ignorant, but I’m sure doesn’t mean to be, or realize. She does not know me well and my strong will. I assure her I am fine and cared for and that I appreciate her sentiment. My response is trite, but an attempt at polite appropriate social grace. I lead the conversation away from the topic of me, yet she insists she must organize some "help" in the form of foil covered dinners made with the love of total strangers. Along with this comes the rules on how I should label and return dishes when finished with the donated meals. I am already dreading the amount of energy I will need to entertain total strangers at my door and collect phone numbers and meeting arrangements for returns and so on. Perhaps they are used to others in need who have the desire of such attention. It is not the help I need or want at their convenience. This is not a broken leg or the flu. They do not understand what kind of support we need but rather they insist. I am made to feel guilty for saying thank you but declining.
The fact is, my husband is a great cook. I do have young children that will not have the mommy taxi for a time. I do not have babysitters or family to help. I do not have a maid to clean my house or do the laundry. I will not be able to drive myself to my chemotheraphy and back. I will not be able to cut the grass or shovel the snow when it comes. They do not ask about those things. I do not want to be a project. More unhelpful helpfulness.
Those are the people who simply don’t understand who I am. I am not like them. I am public about my illness and my strength, because I am confident and I feel compelled to share my story to inspire others to fight this illness and why we need to find causes and cures. I am open when I choose, not when I am forced. I do not wish for pity or attention of that kind. It is a nuisance to me. I know by my own wisdom that they innocently believe they are caring and helpful. They truly mean no ill-will because they are not thinking beyond their own intentions. I am sure to accept their kind notions politely, but the pity does not fit into my will. The pushiness is wearing on my soul at this point however. They serve to fill the unknown gaps in their esteem and enjoy the prize of social grooming when their charitable work is done. I am certain from their perspective, I am the poor lost soul facing death and gloom.
When they see me, suddenly the conversation is only about cancer. Now that I have it, I must know everything. Now that I have it, it must be all that I want to talk about. I listen to so much unwanted advice and pity. They claim they understand what I'm going through and assume everyone’s experience must be the same. They share that they had a relative who had cancer, and so I am forced to listen to the stories and be comforted by the proof of their apparent understanding for my situation. Most of the stories that are shared are about their relatives twice my age. The "cancer talk" is their way of relating to me I suppose. I feel as though my real identity has been stripped away. I can't breathe under the weight of this new identity, what they see.
These are the souls that need constant filling, they demand constant grooming. They must serve and do good deeds in order to feel purpose. Service for a prize. They brag on good deeds intended or done. Their self-esteem is on a daily meter controlled by others actions and opinions. For whatever reason they believe that acts of service is what they must do to be whole. They must be public about their actions. Then I am painted as weak and helpless. They want to take credit for any improvement I make. This damages my strong fighting spirit. These are the people separate from those who intend good for the doing, because it is in their heart, in their nature. There is a different energy felt in pity from the comfort of concern. Concern is born out of love.
I am the soul that looks after my husband and my sons. I have held the hand of many a friend through crisis. Now I look in the mirror and I see what they see. Physically I am changed. I do not recognize the face in the mirror. I am identified by my illness and not by inner soul. The eyes I see lack life and shininess. I am tired. I recognize what I see as me, but then I look away because it is not me. "I look like a cancer patient!" I chose not to wear wigs. I chose not to hide. This is the face of cancer. This is how it looks. It is not cute, pink or fuzzy. Why are people still ashamed? Why are people still uncomfortable? With how many people have cancer, we should all be experts at being around cancer. But people still hide it. People are still uncomfortable. "Breast" cancer is too embarrassing to say for many. I am shocked by people’s prudishness sometimes. They are afraid. It is too much to comprehend for most. I know that. Comfort comes in the knowing. It comes in the journey. The dragon follows me wherever I go. To everyone else, I look like the dragon.
I am no longer afraid of mirrors where I see the sign of the amazon, the one who shoots arrows. There was a fine red line across my chest where a knife entered, but now a branch winds about the scar and travels from arm to heart. Green leaves cover the branch, grapes hang there and a bird appears. What grows in me now is vital and does not cause me harm. I think the bird is singing. I have relinquished some of the scars. I have designed my chest with the care given to an illuminated manuscript. I am no longer ashamed to make love. Love is a battle I can win. I have the body of a warrior who does not kill or wound. On the book of my body, I have permanently inscribed a tree.
Getting ready for surgery. One more treatment behind today. Another day forward! Keep moving. Gotta keep moving. As long as I'm moving, I'm not beaten. I found my smile again and I'm ready to keep going. I need moments to rest and to mourn, but then I need to smile again and feel alive again. My boys are all cheering me on. They watch my every move. They are the light. It makes it so much easier to see beyond what's right in front of me.
Finished my last big chemotherapy treatment. I guess it should feel like a big stepping stone, except that I'm back in the same chair each week continuing with a different treatment. So it doesn't feel quite like an ending to that yet. The treatment so far has very much had a positive effect on my tumor. The doctor can no longer measure it physically at this point. She was so pleased with my strength and progress and admitted pushing me very hard with my treatment. With a hug she celebrated my attitude and success so far. And so, now it is time to prepare for surgery. I don't know what's the more daunting task: having enough time to mourn the changes about to take place, the trip to the hospital and back and all of the recovery required, considering the enormous demands and commitment on my family and friends, facing life ahead with alot of uncertainty, stopping for just a moment and realizing how fast this came into our lives and changed EVERYTHING. So many things I can't even mention. The One thing it has not changed is me...the real me...not what everyone sees on the outside for now...the tired me, the bald me, the sickly me, the medicated forgetful me, the quiet me. It's all the things everyone is putting up with for now while I work on the inner me, physically, emotionally. So many things that they don't tell you about breast cancer up front. Each woman's journey is so different and yet so many assume it's all the same. I've taken on researching everything and questioning everything I have to go through. It's been conflicting at times needing to make a choice that is something I might not normally take on, but instead it turns out to be the best choice that will save my life in my case. This is where I take on a new cause in my life to support work that will offer more effective choices of treatment over lack of choices and death sentences to not just this disease, but cancer. Let's stop labeling and judging how and why people get cancer, and spend our efforts finding out how cancer is triggered to find cures. We can eat right, live a healthy lifestyle, and it just doesn't matter...cancer does not discriminate. Society has chosen to judge how some people get cancer, but what' more important and helpfull? To care and understand and learn about the mysterious things that come along and bring us harm and find ways to deal with them? Or finding ways to label, find fault or blame.Sometimes cancer just happens.One in eightwomen now will wake up to face breast cancer.
However well I become, however long I survive...know I live my each day to the fullest. Not because of all of this, it has always been my philosophy that life is short and precious. I will keep fighting and hopefully all those around me will wait patiently for me to get "back to myself". I will be walking my first Komen walk with my dog Maggie on the 18th of October, the day before my surgical consult appointment. It will be a good day to focus, to think, to press onward.
Please watch these Public Service Announcement Contest entries and vote for your favorite one! Do it for me! One of these will make it to communicate to the world about the importance of Breast Cancer Awareness and Research for a Cure.
To decide the next moment is yet the challenge ahead...even with what is left, I will still be me...just transformed. This transformation is out of my control, it is not something I chose, I do not want it, but I am forced through time. I am bounding through a vortex of surrealness that flairs in the mirror when I take a moment to look. I am who I am by only those that really know me, and only they understand it is impossible for me to remain the same without movement. As I move through this life and what it brings, I have become who I am. Not everything that makes me is quiet or beautiful. Some of the things that are ugliest are someone else's perception of goodness. Insincerity and sanctimonious gestures have found their way in to many parts of my journey, even before this current journey of illness. They do not trick me or harm me. For those that really know me, know a strong, determined lioness. It is not the tragedies in my life that have made me strong, but rather the behaviors and attitudes of my audience have made me want to be a survivor when I could have been a victim. Being a victim of my thoughts or circumstances requires me to allow others' judgements to control my choices. I smile each day, even when I need to cry. I cry when I need to feel the other side, so I may return to strength. In my youth I used to worry that others would not or could not understand me, therefore I would never really be known or accepted. Now I understand I need not explain who I am. I am loved by those who love me. I am understood by those who choose to accept me. I am free to be misunderstood and unaccepted. I am born to fight. I am meant to smile and my smile hides nothing, but shows the real me. To see my smile is to see the depth of my soul. If you feel my smile, you have taken a step in coming to know me.
Sitting here at the hospital again getting fluids and pain medication. I'm here 2 to 3 times a week for something and have come to know much of the staff! They're all great here and take good care of everyone. Good joking around too keeps things on the positive. I come rolling in saying I'm here for my cocktail hour...or two!
I'm closing in on my last treatments before my surgery in November. It's always good to look forward rather than behind and know I have fewer to go.
Forgiveness is not something you do solely for the person who hurt you—it is something you must do for yourself. Holding grievances against others invokes a chain reaction of negative feelings on the neurological level, creating a cycle of harmful energy.
By opening the heart and allowing grudges and anger to move through this boundless space, powerful healing can occur through meditation and prayer. Although it is not easy to move immediately or seamlessly from injury to pardon, practice and patience will lead you on the road to true forgiveness.
True, deep forgiveness accesses the recognition that all humans, however terrible or hurtful their actions, exist with basic goodness. This realization can transcend into an acknowledgement that we are all intertwined as part of a greater whole, and when we forgive someone else we are forgiving another part of ourselves.
What makes me whole and "healed" are these wisdom's of life. It is what I teach my sons and share with those who know me - it is my circle of life that defines me. I have broken down walls that were put up before me through keeping this wisdom. Behind those walls was fear. Fear keeps us from growing. Fear is negative energy. Forgiveness dissolves fear. It's never too late to grow! My love to all who have blessed my life!
Thank you to everyone for all the birthday wishes and donations to my cause! I love you all! Thank you for all the tireless support and things you all do. Every little note lifts my spirits, thank you!
I had a nice relaxing day with just a small gathering of family, good dinner, popped a cork and sat around a nice fire for the evening in great weather. Simple good times with people I love and watching my kids play means so much to me.
So glad Bob and I went out for that "fancy" dinner months ago when we could celebrate looking and feeling great, was not just having a "good day". We rely on that memory to cheer us up occasionally, but I am surprised by all the additional memories and good times even now on "bad days" with those I love. Being sick doesn't have to be lonely and depressing. Surrounding myself by those I love and reaching out openly with what we're going through was scary at first, but it has made a difference. Understanding the commitments everyone around me make repeatedly. It all makes the journey a winning one! I will heal, I will get to be "myself" again one day, for now, thank you for your patience, your tolerance, your love.
I received so many meaningful gifts of time, love and thoughtfulness! Thank you to all. Especially some important ones that make my experiences (chemotherapy symptoms) more palatable!! Turning 40 was fairly painless! I've had worse! Ha!
Just celebrated my oldest son's 9th birthday yesterday. Had a great time taking him out for a special fun day and then celebrating at home with our best friends with dinner and cake. It was nice to have some energy for making his day special...just the simple things like cleaning up the house, wrapping presents, baking a cake. Energy we all take for granted, I was blessed with the energy to get through a special day with my son.
Today was also my 9th treatment day. Blood counts were done and I keep dropping all the numbers that mean I'm weakening under the load of chemotherapy. Will power alone won't bring up the numbers so I'm getting some new treatments to help. I received a shot today after my chemotherapy that should help raise my hemoglobin (red blood cell stuff). If my numbers don't climb between now and next treatment, I may need a blood transfusion to help. I hadn't noticed, but the symptoms for my red blood cell troubles were fatigue and pain in my legs (like the pain you feel when you've climbed alot of stairs). I had some energy to do things, however, my muscles felt the strain and pain of a good workout over even the smallest tasks.
I have my bigger chemotherapy day next week which usually makes me pretty sick for about a week or so. My birthday falls after that...yes...the BIG 40. So.... We have a canoe trip planned for this weekend. This is my celebration, my fight that I'm still alive and can do things I love. I will be out on the water with my family enjoying the stillness of life and the beauty of the river. I look forward to it, it will be a good day. A blessed day.
Hanging out at the hospital today. Got pretty sick after my treatment this week. My body is weakening on the chemo, but I'm hanging tough as possible. Getting fluids today and Morphine. Pain is getting worse and can't get enough relief at home. Vicious cycle of pain. Pills at home don't do enough, then I end up back here at the hospital to get something stronger. I'm glad to have the love and support around me. All who come to help me. My gratitude is endless to you. I have morphine in me now, but I'm focused on getting home and hugging my boys. The folks were up helping out for the week. The boys really enjoyed having them around! My friends who are my family here are showing tremendous strength. I love you all...you sustain me. One more treatment done is one less to go!
Hanging in there, but chemo's getting tougher. Side effects are getting stronger. It's knocking me down but I'm hanging tough. Had to go to the hospital yesterday to get re hydrated and medicated. Hung out with IV bags for hours. Missed a nice sunny afternoon with my boys. Feeling some better now, but taking it easy. Trying some new medications to handle the side effects. My doctors are trying to keep me as comfortable as is possible. Hardest part is not "being myself" on all the medications, being weak, seeing my boys not "seeing me" but a sick bald mommy. They are tough. They are amazing, they give lots of love and comfort and I tell them I'm strong on the inside and I'm going to be fine. Family and friends are doing so much beyond words. The help and support are amazing. I love you all.
A gorgeous sunny day....had to get out and move with my family. Boys went on bikes with their dad while my dog and I had a great walk on a local bike trail. They are amazing, my family....they keep paces with me!
Had a great evening out last night for the 4th of July also! A great time getting out and seeing the fireworks up close in downtown Pittsburgh.
Friday, July 3, 2009
Three weeks to date, hair is gone .... just like that. Took about 2 nights to fall out and then decided to shave the rest just to be done with it. Felt better. It does really begin to "hurt" before it falls out. Still got the brows and lashes, knock on wood....for now. Folks were up to help out for a week and had all the scarves washed. Guess they had no idea, I would need them the day after they left! Wore the first scarf for the first time last Tuesday to chemo. My friend showed up to take me and wondered if I had gotten fed up and cut my hair..........nope, just fell out over night! Needed to put a scarf on all of a sudden just like that! It's cool, I was ready. Even had one picked out just in case lost too much out and about! I guess I had a feeling!?
Doing rather well on chemo considering what it is capable of doing....mostly tired, weaker than I'd like to be, and have regular insomnia. Oh well, I get to write alot. Have alot of "brain black holes" too...just stop or forget what I'm trying to say out of nowhere! Or wait...is that motherhood or that I'm pushing 40 in a month? Who knows! It's easy to blame it all on chemo for now! Sounds too good anyway! When in doubt, blame it on chemo...can't pull the "blond" moment card anymore! Ha!
Friends are coming out and helping in amazing ways! I love you all for that! You all rock! You know who you are! I'm not sitting down on this one! And I appreciate that you all know that.
Tuesday is club chemo day number 4. The big day...lots of drugs...all day long. My babe will be with me for that day. He is amazing! Just moving forward, even after he's been in a car accident this week! I love him like most don't understand.
Time for me to get some rest before I celebrate our country tomorrow! I love what so many have given up so we can enjoy! Freedom! Thank you to so many who gave up so much to give us what we have here and now! (First time out in public with a scarf too!)
Insomnia, indigestion, sleeping all day when I don't want to, chemical peel looking face and skin, dry mouth, boredom, not having enough energy to do what's on my mind to do! Just getting started....more lovely things to come! Got all my scarves picked out. Had a great shopping day with someone who has awesome taste! Getting help from loved ones. Taking care of everyday life when I can't. Love you all so much more than you know. What's next? Ready to go. Need a good day out at the river watching my kids swim and play. Not gonna stay down! Gotta keep moving!
Club Chemo every Tuesday! Party time! Ready to kick cancer in the ass!
Second Chemo treatment today. 2 down, more to go. Not counting. Laughter, love, comfort, care, the healing. Having the company of a soul mate and being looked after. Medicine is in the background. The rest is the real medicine. I love you all who love me. It is my power. My energy.
Taking my birthday boy to an amusement park for #7! He is so excited. I may not be able to get on the rides with him, but I'm not missing the joy on his face for the world!!
Well, I am certainly learning alot about a new club I never intended to join. My eyes are opening to alot of new experiences that seem all too familiar to all the people who have been doing this longer than me. Cancer. It is what it is. And now that label is on my forehead. And all the lovely things it comes with...
...being tired all the time
...everything I do for others...not being done
...my boys watching their once very active athletic mother not be that
...watching my husband do double duty without question
...watching the toll it's taking on him
...watching the toll it's taking on my friends
...feeling how much I never knew I mattered to others
...wanting to stay strong, but sometimes...I just can't
...then those who know and love me kick me in the ass!
...tomorrow's another day
I have about 3 weeks or so left to enjoy my hair...so they say. The people taking care of me know what they're talking about. They're good people. I'm under good care. It's alot of work to get there. Long road trips but so worth it. Left the bad care that was close and convenient. I had my first chemotherapy treatment yesterday. They did all possible to make it a "comfortable" experience. I had alot done though and it took all day, literally. I counted about 11 medications I received by IV ...one at a time. Got sick on some, but handled it all like a trooper.
Had to get another medication today that will stimulate my bone marrow to produce white blood cells to help what I've lost since yesterday. This is worse than the chemo. Feeling very sick tonight as I'm describing this. Sitting still and typing is about all I'm capable of now. Just focusing.
The help I've had today to get through the day was amazing. My "best" is there for me all the way. This is love. The rides to and from are mechanical. It's the stuff in between that keeps me alive and going. A side track of shopping. Parenting my children when I can't. Making my kids feel at home and loved when I'm not there. Throwing the football around. Sharing a song. A look. A beer. A good joke. A smart ass remark. Knowing when to be quiet. Knowing when to laugh. Being known.
I've cared for others my entire life. Others have depended upon me. I drop everything and go where I'm needed. I love life intensely. I love my family and friends intensely. Caring is what I know and who I am. Caring was my profession! The nurses and doctors find it easy to relate to me when they find out I was a Social Worker. It makes it easy to speak "the speak" of medicine and caretaking.
Now I've had to learn to receive. Still not easy, but I know I must in order to survive. I realize as hard as it is at times, it's good for those who help me too. I must accept that and not feel bad for the hard work everyone is doing to help me survive, even the mundane everyday things. I'm lucky. My circle may be small, but it's very tight.
Beyond that, I'm learning how "BIG" my unwanted club is. And I'm doing what I can to get involved in the bigger fight out there. Not only cancer as a whole, but in particular breast cancer among those so young as myself. We are the ones falling between the cracks because of awareness, insurance, money, standards, medical shortcomings, lack of research and the list goes on. The worst one I hear myself and that others share with me..."You're too young to be sick". A slap in the face when you're suddenly fighting for your life when you thought you had everything ahead of you. Well, if I can't accomplish the things I set before myself in the short term before this started, I have the fortitude to fight the big fight out there in the political and medical world. I will not be silent. I will be one more voice to speak up for those who can't to fight for change so all this needless illness can stop or be caught earlier. Older women have a greater chance of survival because of the current medical standards for detection and treatment. Younger women are not listened to or tested. It must change. If you are a woman reading this, please join me to help yourself and those you love by joining the ARMY of WOMEN. It is research on real women to find a way to prevent, cure and detect cancer earlier. Don't believe that ONE won't make a difference. A group is formed by a whole lot of ONES.
Had the surgery yesterday. Got up pretty early....4:30a.m. First on the table at 7:30a.m. Well, it was surprisingly a very positive experience. It sure makes a difference to be under excellent care by very good caring people. I have an amazing surgeon who gives me complete confidence in my care. She has a great personality that I jive with and is excellent at what she does.
Of course I was very anxious the night before and didn't sleep very much. Full of adrenaline all day!
From beginning to end, the staff and doctors were wonderful. Leaving my worries to rest. We arrived at the hospital and were received in caring hands. We will stay put with this team for now. Trying to go to other facilities for the sake of location or convenience was a mistake. Quality care is priority, no matter the sacrifice. I am fighting for my life and what that means, so we must keep that in mind. The children will adjust. Eventually, all that is inconvenient will become routine. The strain it puts on my family and friends will become a normal day and we will all come through to the other side. I must keep learning to let go and be cared for. A difficult adjustment for such an independent woman as I am. Humbling.
Here I am, getting ready to have a Central Intravenous Catheter installed so that I may proceed with chemotherapy as aggressively as needed. It's amazing what they've come up with now. I'm glad to be at this point in medicine that I won't need to be stuck with needles constantly once or twice a week. This device will be able to stay indefinitely. It must be surgically removed, so hopefully by the time I don't need it, it would be time to celebrate. It is a valve that has been surgically placed below my collar bone with a catheter inserted into my major vein leading to my heart. Each chemotherapy treatment will be done by placing a special needle into that valve just below my skin. This prevents wasting of veins and collapsing/deterioration. It appears as a large lump under my skin with a 2" scar from the surgical incision. I'll take a lump over bruised arms!
Telling my boys about it was an adventure. As far as they are concerned, Mom is part Bionicle with a new "button". The doctors can give Mom medicine into the button which will go attack the cancer bad guys like Pac Man.
I'm recovering now and doing well. Fairly fatigued and aching, but well medicated. My mind is racing with excitement that all is very real now and that I will be receiving my first chemo treatment on Tuesday. Perhaps not a thing I should look forward to, but to me it is getting on with healing despite the high price. I'm ready to get on with it. In the meantime, I'm enjoying my short haircut for awhile and collecting beautiful scarves from my beautiful friends.
Off and running to my first surgery....yes, really 1st. Never had any surgery in my life, now I'm getting my first outpatient surgery this morning. It's getting very real now. I'm very anxious today. I'll be under the best knife, but still very nervous...
Time to cut the hair short. Getting ready for the chemotherapy and donating my long hair before it's too late. Gonna enjoy this for awhile, and who knows, after I loose it and it grows back, it may be a new look to keep!
Back on track with a new oncologist and amazingly chemotherapy is scheduled already the same day I meet her. No messing around. No waiting until July to get started like this local place! Hopefully things go much more smoothly. It will be a haul however, nearly an hour away. I guess we just keep figuring out how to do everything as we go along. We have great friends and support. It's difficult to let others help me. New territory! But I'm trying because I know soon I need to focus my energy on healing as my treatment begins. I must let go in order to take on new things. It will all be stressful and tiring on my friends and family, but I know they love me and they have chosen to journey this with me. In the grand scheme, all of their presence in my life and who they are keeps me going. The comments and notes are a positive force that sustains my attitude.
Well, after such a wonderful and memorable evening last week, the next day was my first "welcome to HELL-th care". We had a horrible experience with a local outpatient facility. The real downside is that we witnessed a habitual function and attitude with staff that was very negative and stressful. This was to be a facility that would be a 10 minute drive to get my weekly chemotherapy. We will not be returning. My dignity and privacy was neglected. No patient need experience the series of events that I went through there. The level of care was below standard along with basic patient rights violated.
Despite a very frustrating and stressful day, we plan to move on even though it will push back my treatments now that we have to change. It will be more difficult managing daily life traveling further for chemotherapy treatments. But we always find a way. In the beginning I will need chemo once a week for 18 weeks. My treatments last around 2 or 3 hours. I will also need blood work which will make it 2 times a week we will be traveling to a clinic.
On Wednesday, I go in for minor surgery to place a central IV catheter which will allow me to get the high volume of IV treatments without collapsing veins. I can only use my right arm for IVs, as my left arm is affected by the cancer. At this point I am uncertain when I will start chemo as we are arranging care elsewhere. Hopefully ASAP.
