Breast Cancer Awareness is more than a Pink Ribbon

WHY YOU SHOULD SEE THE TRUTH and BE AWARE ABOUT CANCER RESEARCH FUNDS IN GENERAL

It is DAY 9 into Breast Cancer Awareness month. Every Pink Ribbon decoration makes me angry and I start to get more angry. Why am I angry? The reality is that these ribbon sales are more likely from random organizations that are more than likely do not donate to finding the cure for Breast Cancer, but are using the ribbon to fill the pockets of the companie's employees and to produce more random pink ribbon pins, hats, shirts, and I have seriously seen a trash collection truck decked in pink for Breast Cancer Awareness. Yes, a trash collection machine. Reality of Breast Cancer is that regardless of what stage you were originally diagnosed with, early stage treatment patients are looked at as survivors this month. Most walks and runs in October are for the CURE and persons who had cancer get Survivor shirts. 

Unfortunately statistics state that 20-30% of early stage women could be diagnosed with a recurrence/metastatic breast cancer at any point during the rest of their life. I know I have said do not believe in statistics, because there have been many men & women to prove those statistics wrong, but for my blog today this statistic is something we need to be aware of. Also these organizations that want to plaster a pink ribbon on their detergent or even car dealership windows do not donate 100% profits to end stage breast cancer, which is the only type of breast cancer that kills & is the type of breast cancer that needs a cure. Early stage women have access to effective treatment that does keep many, many women in remission until their death and will never struggle with cancer again even at death's door. Reality is 113 women and men die from Metastatic Breast Cancer or Stage 4 Breast Cancer or the Breast Cancer that kills 99% of women with 1% possibly dying of other causes although they are living with Metastatic Breast Cancer until their death. 

These ribbons and organizations lead us (unless someone has made you aware via social media, life or you have had breast cancer) to think that all of that money used for purchase of that product go to FINDING THE CURE. I have heard that some of these companies give only 10% of their profits to Breast Cancer and it is usually to an organization that does not work on finding a cure or helping women cope with financial struggles when diagnosed with breast cancer. If the profits happens to go to a company focused on donating money to research, MOST cancer organizations donate a fraction of profits to research and then 2-5% of that research money goes into research for metastatic disease for finding a cure. 

THIS imbalance of profits raised for breast cancer is common across all cancer types. I wish I knew the best organizations for every cancer that donates 100% into finding a cure for late stage cancer (5-7% of women are diagnosed as stage four from the start and my % could be more, because I have a horrible memory) and also improving early stage treatments to prevent the 20-30% recurrence rate of women with early stage disease. So like every October, I ask you to look into the organization that will receive the profits for the Breast Cancer cure and make sure that the money is going into research. Ideally I wish I could force all these places to just donate to Metavivor, who donate 100% of funds to metastatic cancer research. Reality is that there are other stages of cancer and other needs of cancer patients that also deserve to have a fundraiser give 100% of its profits to early stage research, financial support for bills, medical cost assistance, and even grocery cards to help feed families struggling financially. If you cannot find how much of the profits go where, ask someone running the event or someone living with cancer who may know details about where that organization uses its money and if that organization actually helps cancer patients and does not use October as another way to increase their capital gain and salaries of employees. 

Now onto my reflections of today that may help show you what CANCER is really like even when it gets hard....

WHAT YOU NEED TO BE AWARE OF TO MAKE CHANGES AND SAVE LIVES

Here are 10yrs Reflections that will increase Awareness of the true reality of Breast Cancer, which I can only tell from my personal story with cancer. Why Am I writing about my Reflections from the last 10yrs? If you have been reading my blog, I was diagnosed with cancer in 2010, which would be reflections of the last 9ys (I am 1mo into my 9th year with cancer). These reflections date back to 2009 when my Aunt was diagnosed with cancer. Also, my aunt had Ovarian Cancer, which receives less funding and have less fundraisers to help find the cure. From 2009-present, more cancer treatments have become available for both Breast and Ovarian Cancer (and other cancers), but so far none of these treatments are the cure and every treatment that is made does not always work on every patient OR it is for a specific subtype of a cancer (targeted therapy) so it effects a % of persons with that cancer but not all. When my aunt was diagnosed with Ovarian Cancer, I knew she had a cancer with limited treatment and that required a super hard debulking surgery and the recurrence rate was very high for early stage Ovarian Cancer patients. I learned this and became aware of this because of what my Aunt taught me. In the back of my head I kept saying I wish she had an easier cancer, like Breast Cancer, but I was not AWARE I only knew that Breast Cancer had all these organizations and fundraisers that it must be cured. With time I learned through increasing my awareness about cancer most notably Breast Cancer that there is no easy cancer and even a highly researched cancer like Leukemia has a 99% curative rate, relapse rates remain high and its still as hard cancer to live with. 

Advertising from Organizations and Fundraisers can distort an average person's (someone not living with or who does not know someone living with cancer) awareness about the reality of cancer. Also you could know someone with cancer and love that person, but you still may belief myths about cancer that there are hidden cures, are cures for some cancers, etc etc. Reality is that Leukemia was the first type of cancer that was treated with chemotherapy, so more research has been done with that cancer using chemotherapy, so people assume it must be cured and no longer needs a lot of research. Most blood/lymphatic cancers do respond to chemotherapy, but not all and these cancers do have a high chance of relapse with limited therapy available for relapsed cancers. Most solid tumor cancers are believed to be cured once removed from from surgery, but most people are only minimally aware that these cancer usually require chemotherapy and/or radiation to increase the chance of survival. Most people also aren't aware that despite having surgery, radiation and chemotherapy, each cancer has a recurrence rate and no solid tumor cancer has a documented cure. For instance, Breast Cancer was one of the first cancers using surgery as a primary treatment option, so many people think that a mastectomy or lumpectomy is "easy" due to over 100yrs of perfecting the surgery to help remove the cancer and cure the patient AND that chemo and radiation are just extra insurance to make sure the person won't have any more tumors. There is no cure and when these solid cancers return in other organs & the blood/lymphatic cancers relapse those persons will die of that disease unless a cure is found.

I am going to get off the soap box about the lack of funds for research, because it makes me get upset and then angry. Today I wrote about that before I wanted to discuss the reflections I had this morning about my personal journey with cancer, because I wanted to channel that anger and discontent into awareness showing how being passionate about the cause to improve funding for research for cancers can make a huge difference. 

MY STORY TO INCREASE YOUR AWARENESS

HOW ONE PERSON CAN INFLUENCE ANOTHER PERSON TO PULL THEMSELVES UP EMOTIONALLY AND PHYSICALLY DESPITE HAVING CANCER, WHICH IS HARD, DEBILIATING, EMOTIONAL, AND PHYSICALLY LIMITING THE LONGER YOU HAVE IT

Today I want to talk about how my Aunt's diagnosis and the things she had done & told me throughout her time with early stage and then metastatic cancer until her passing. Her behavior and taught lessons have not only helped me through my journey with early stage and metastatic cancer, but they also have worked to challenge my personal moments of hopeless, fearful, and depressive thinking about my cancer. 

Recently, I forgot those lessons until three memories popped up in my news feed. One reminded me of who I was before I knew I had cancer. This "past me" I sometimes compare myself to in my dark moments - I think "I used to be able to do XYZ and I need to do that again or I am useless." The second was really just a combination of two events - my first hospitalization due to the cancer in 2015 where I had my first serious surgery to my lungs for the metastatic disease and my longest hospitalization due to the cancer's damage it had done to my lungs and peritoneal lining in 2017 & was when my husband was told I may not see the holidays and probably won't see 2019. The third was me on a soap box about Breast Cancer Awareness Month and all the pink ribbons I see on social media and in my community & how it does not help find a cure. As stated above I have mentioned why no pink ribbon is a cure nor is it always a path towards finding one. All of these things had post for October 9 reflecting on that day. Those memories took me into thinking about where I stand today and reflect back some current thinking I have been struggling with since my most recent hospitalization over Labor Day due to my 3rd bought of pneumonia, which has led to a resurgence of intense fear of death, a resurgence of a critical mindset that leads me to avoid new challenges, and more procrastination of goals, due to feeling hopeless, that were plans to reengage in activities that have helped keep me as sane as possible in the past. In turn, this morning I became aware that my stinking thinking was holding me hostage.

So here is a story, a reflection, and where my crazy head has been for four weeks and how my Aunt's lessons & my personal past memories have helped me crawl out of a mental hole.

Once upon a time, there was a young woman who started to run longer than this. I got up 10mi in 2009 and was able to keep up this amazing level of fitness to be strong for my aunt/godmother who couldn’t (at that time). My aunt/godmother, Kerry, who a lot of the time who also felt like a sister and one of my best friends, healed from her ovarian cancer surgery put back on her running shoes and I can remember sometime in late winter / early spring she was saying she would run 2mi on her treadmill or go for long walks with her friends, neighbors or my uncle. She was so proud of herself and I was of her. 

I ended up injuring my left knee pretty bad that spring after 13yrs of long distance running on pavement and concrete. I also was struggling with fainting episodes, which we thought were seizures and it was actually due to having dangerously low blood pressure from not eating enough sodium to compensate for how much I ran and lifted weights on a daily basis. I was sidelined and I saw my aunt, who recently went through a hard surgery with a wound that was a PITA, and she started walking as soon as that wound was almost gone and eventually she was running through chemo. Things were scary that winter but Kerry kept hope and kept pushing herself along even if she wasn’t as fast as she was before surgery and had to take more walking breaks than she ever had to do before. Kerry was just that type of person and she believed that running kept her from getting “hyper as she called it” 

And not moving was not helping her mentally. So at 51, my aunt kept moving. Honestly she was still going on walks until a month before she passed and not because she just didn’t want to walk or that the chemo got to be too much, my aunt lost the ability to walk without assistance due to the cancer. At the time my aunt lost her ability to walk, we already knew I had breast cancer and that my breast cancer had become metastatic and returned 3yrs after my initial diagnosis in 2010. I can remember telling her that I bet she will be asking for physical therapy and will be walking again soon. She did and was able to despite the cancer really taking a strong grip on her. I remember telling her that I want to have the same fight as her, to keep moving and keep asking for help to get better no matter how hard it would be to pick myself up out of the bed in the future. I admired her perseverance, hope and strength. Until she was put on hospice, she kept wanting to continue treatment and therapy to get herself moving again. Kerry and I both knew that our diseases would put us on hospice one day, but she never gave up hope if her present day gave her the ability to stay on treatment and stay alive for that day and no one had given her a HOSPICE recommendation or what we called it "an expiration date." I can remember the day she called me when she was unable to walk and she said "I guess I am unable to walk for now." I can also remember her texting later that day or week - “I went to get up and couldn’t - I guess I cannot walk for now so I am going to the hospital to see if they can get me walking again.” I remember asking her if she needed me right now and she said no but she may need me later. I told her I would keep texting and asking her when she needed me or if she would rather my mom come. She said “I have Greg now and will be home soon.” She told me “right now I need you to keep moving and keep yourself strong and keep doing my best with the cancer.” I agreed and I knew what she meant, so I went to the gym that day, the chiropractor and a late beach visit hauling my chair, bag and cooler without help through the sand and hot August sun. I texted her what I did that day and will keep moving until I have been medically ordered to rest or if my body just wasn’t able to move and I needed to get to the hospital or physical therapy ASAP. She was a bit groggy but she said she was proud of me. I asked her to call me if she ever felt alone because I was out on medical leave and could listen to her be chatty Kerry (trust me, my aunt could talk forever, but it always had a point & I didn’t mind listening. Kerry truly never felt that life gave up on her or that she was failing at this whole cancer game BS. She said that what is keeping her sane beyond always trying to keep busy with exercise, gardens, reading, making plans for everyday she didn’t have chemo even if the plan was just “gardening” and spending time (a lot of it included short vacations to the beach, Atlantic City is to car shows) with Uncle Greg, our family, & her friends. 

In 2009, we had no idea that I was brewing cancer inside of me. I knew my aunt was staying hopeful, busy, and positive while living with a hard disease but she came out of it working towards regaining some if not all the strength she had before the cancer surgery. What she did stuck with me and in April of 2010 I had my second clinical breast exam ever and nothing was found. Three months later I found a lump that felt quite large and myself & the lump was then found by my OBGyn a few weeks later. Both my obgyn and I were both scared, confused and shocked that this lump appeared so fast. He and I both hoped it was just a random lump, but I knew this man for 7yrs and I could see in his eyes that he knew what I knew from the moment I felt this lump - I had cancer.

I started running again before that lump was found and was back up to 6miles & was advised to split my runs and heavy lifting on different days to give my knees a break, proper recovery and increase strength. When I found the lump, running was all that could keep me sane through the waiting to see my PCP and also my ObGYN for two opinions about the lump to determine it was cancer. My Obgyn sent me for an ultrasound because my insurance and mentioned possibly needing a biopsy and he gave me the name of a local breast surgeon to also see after the Ultrasound. When I asked for this referral at my PCP appointment he was shocked and looked sad, my mom and I had been going to his practice for 11yrs. Regardless of how young I was (25) and that the radiologist who read my ultrasound recommended a biopsy and a possible breast MRI, it took 3 weeks to get that biopsy and MRI to explore what was going on. No matter how many secretaries I begged to have me seen sooner because I was scared and knew in my gut this was cancer I had to wait because "you are 25 and 25yr old usually do not get cancer and we also take patients not due to personal fear or even a clear knowledge that you do have cancer, but based on how soon they call and the next available appointment." The wait to be confirmed that i had cancer, which I knew the lump was because I just felt like it was the only thing it could be." I also knew that my family was known to either have Cancer or Heart issues. I already had a cardiologist at that time due to having dangerously low blood pressure that was causing me to faint from intense pain like twisting my ankle (that has always twisted and popped back for years), pain in my knees from running to banging an elbow at work and passing out that previous spring. I knew that it must be cancer because I already had heart issues and was recommended a high sodium diet to increase my blood pressure, which worked and helped me avoid having to take a medication I did not want to take. I knew I had heart issues and a breast lump was in no way connected to the fainting or low blood pressure. Trust me I asked a radiologist, my OBGYN, my Cardiologist and my PCP if it could be multiple times. I just had to wait for the biopsy and approval for my insurance to cover a breast MRI in a 26yr old woman (yes, I hit a birthday through that whole mess and my insurance still was kicking back at scanning me for cancer until I had a confirmed biopsy because I still wasn't old enough). 

So as we all know, that biopsy was positive for breast cancer, or this blog would not even exist in the first place. What kept me sane was remember how my aunt coped with the stress, worry, and anger with having to live with cancer. I kept busy and lived my life. I worked and I kept working out despite being told I was sick, because my body was still capable of moving and at that time it was still capable of doing seriously hard exercise. I knew from seeing my aunt's recovery from surgery and loss of energy from chemo that I may have to spend more time at home and less time being social until I had more energy & that I would have set backs in my physical fitness, but with baby steps I would get myself back up again. All of that was proven to be true not only in 2010 after my mastectomy and when I began chemotherapy for 16 weeks of chemo, but it also held true when my cancer returned as metastatic and I became part of the 20-30% of Breast Cancer patients that had a recurrent after early stage treatment. It held true in 2015 when I had not only radiation to my T2-T7, had surgery to place my first Pleural Effusion drain in my left lung, and after my first Craniotomy. I held the belief that with my doctors approval I would be back at being a busy bee and back slowly regaining activity given whatever limitations I was medically given during those times.

Things began to get harder after I had to have that second Craniotomy surgery due to an infection in the wound bed. My appetite was impaired due to depression from having the second surgery and having to stop my chemotherapy at that time, which I felt was working. I did not push myself or set goals for myself daily, I would randomly want to walk or ride the recumbent bike or do yoga & I was either unable to engage in or was avoiding social activities. I was depressed and when I went back on the chemotherapy, it was not working and I lost more weight, became more hopeless and honestly started to do nothing to keep my mind busy or work towards improving my physical strength. I just was hoping I would be alive to see my wedding in 2 months back in early 2017. Despite being happy and full of joy on my wedding day, the failure of chemo, progression of cancer into my liver and peritoneal lining, and losing my belief that kept me pushing through all of my cancer's personal ups and downs left me hopeless and depressed. 

I do recall feeling hopeful before our Honeymoon when I learned that my cancer was retreating. I was lifted of the hopelessness and was able to truly have fun, distract myself from the struggles I had over the past 5months and was starting to mentally set goals for myself - to start walking outdoors, go to the beach to breathe in the ocean air, read books again (usually 1-2 a month I have always been able to do even when working), and getting back into crochet, and trying to go on 1 small trip every month even if it was just to visit my parents for a weekend. At that time, I felt hopeful that these were reasonable goals I could continue for life or build upon. Unfortunately this hope died fast, my cancer started to grow rapidly within 2 weeks and my lungs and peritoneal cavity had multiple tumors and a few (especially in my peritoneal cavity) were quite large. After being hit with that blow to my gut, I literally started another new chemo (my third in 5 months) and then was hospitalized for pneumonia where I was constantly reminded by medical staff about how bad my cancer has gotten since 2015 when I was last hospitalized for lung related issues. 

From that hospitalization until who knows when in late 2017, I felt that goals were pointless. I would go on walks, but eventually the humidity made my walks more difficult (or so I first thought), but the reality was that my lungs were getting weaker and I was having shortness of breath, which I never had before so I had no clue what that would feel like. I just felt like it was humid and I was having breathing issues like I did when I ran in humidity before I had cancer. I knew in my gut, it was cancer. I did not want to leave the house and I spent more time on my couch truly afraid of making myself worse if I pushed myself to be social (I felt I would get sick and hospitalized) or if I was active I would not be able to breathe, would pass out and die. 

Then came the hospitalization from hell in 2017. I almost died. My husband was given the hospice talk and was afraid I was never going to get home again. When I was alert and was 100% aware of what was happening and how bleak things were looking, but since I was alert and off of the ventilator I was able to dig super deep inside of me and find a tiny glimmer of hope and that hope came from those lessons my aunt taught me. I fought for physical therapy to get me walking again. I fought for a paracentesis to drain the ascites formed in my abdomen from the peritoneal tumors. I also wanted to get myself home even if that meant I wouldn't see the holidays and most likely would not see 2019. I wanted to be home with my family and in a safe place that was not a hospital. I knew that I had to work hard to get better and not die, but at that point it was more likely that I could get better to go home so I could die at home. It's the truth and I am not sugar coating that for anyone anymore. 

So on October 9, 2017, I was home. I was getting treatment at the local Sloan Kettering (MSK) because my doctor had transferred to MSK right before my hospitalization from hell. I was able to walk without a cane and was slowly regaining the strength to walk up stairs without requiring two people to balance and push me upstairs. I wanted physical therapy and my physical therapist kept me positive and hopeful that our work together will get me strong enough to be physically active alone by mid-Winter. I can remember struggling with that fear of not getting off of the traech, not having my second pleural catheter removed or the pleural effusion ever drying up, and having to constantly go for weekly paracentesis to remove ascites and improve the pain they were causing in my weakened back muscles from being bed bound for almost 40days. 

Although sometimes the memories that pop up on my Facebook can send me into a downward spiral into "how things once were better," "what would life be if my cancer never came back, or "why is my cancer never getting better or hasn't in X amount of months," today those memories of although very difficult times in my life and memories of who I was before cancer made me reflect on the lessons I have learned from one of the fiercest cancer  thrivers I have ever met & how I was slipping back into that negative thinking that I struggled with in 2017 and how I should apply those lessons I learned from my aunt and also from my personal experiences to make today a better day than a day lamenting of what was lost and afraid of what will come.

I know I will die from cancer. Today I am not dying and today is not my last day on earth. Although I am typing today feeling nauseated as all hell from having all three of my chemotherapies this week, I can choose to spend my day fixated on instagram or facebook about negative and unhelpful comparisons about how I wish my life was like so and so OR I can use my day doing what I can despite feeling like a nauseated piece of poop. I chose to write a blog about my story to show you what its like for a real person dying from cancer when they are feeling unwell physically and mentally. Today I chose to use my free time writing a blog and listening to my body to see if I can do minimal exercise today. I implemented this thinking yesterday and was able to motivate myself to exercise for the first time since May 2017.

Trust me, after having pneumonia twice in three months, which were the primary culprits of me giving up on working on my physical activity or making plans to be social with anyone. I could give up and trust me I had thoughts about my physical abilities that would make anyone want to give up like "what is the point, I am so out of shape." Then I remembered, today I can walk and today I will use this ability in the best way that I can, because one day, maybe not today, I won't be able to walk when I want to. I remembered the lessons that Kerry taught me through her long stories on the phone or through her behavior that always strove to do as much as she could no matter how sick she felt because she was not dying that day nor was she unable to due to cancer stealing her ability to walk. I also remembered that a year ago I barely could walk without a cane, wheelchair or assistance from my family or physical therapist. I reminded myself if I was able to eventually walk again a year ago and I surpassed that expiration date given to me by a consulting oncologist (not my three Oncologists at MSK), that I will do my best today to be active. That I will work with my weakness and be ok with starting with baby steps and a fitness ability that pales in comparison to what I was a long distance runner, which maybe I will be one day. I actually began to set goals yesterday and saw that I can do 20 jumping jacks, climb upstairs without assistance and without shortness of breath, and do various weight lifting activities at home with a weights resistance that is much lighter than I was using in May. As of now I have today and possibly many tomorrows to keep building on that strength. I also told myself that if I am capable of being social and making plans ahead with family & friends to stop avoiding making plans due to fear of being unable to follow through with those plans because of the Cancer. I will never know ahead of time if Cancer will get in my way and force me to remain on the couch only capable of watching TV, reading or crafting. I also won't be able to predict if I will be well enough to see people who I care about and have fun. Since I am not a fortune teller or have some mutant ability to see my future to guarantee that in 3 weeks I will be better or sick, I should still make the plans and if the day of I do not feel well I will deal with that obstacle if it will come.

Don't Ever Give Up ... No Matter How Bad Things Get

In summary, anyone with metastatic cancer struggles with fear of the future and how bad things may get or when they may die. We also struggle with this awareness of what we used to be able to do and the reality of what Cancer has taken away from us, which leads to a lack of hope of being able to do anything again. This is not always true. You may be weaker, but if you can move, move if you want to and do not be your worst critic comparing the pre-cancer you to the you that you are today. Today you have metastatic disease, which deforms our bodies, weakens us, changes us mentally, but today you may be capable of going for that walk you used to enjoy when you felt less sick. Go on that walk, because you can, and stop if you are tired. Do not beat yourself up for feeling tired and do not let that be the driving force in you giving up on things that do and have once made you happy. Keep doing and keep living. No one is guaranteed a tomorrow and people living with terminal diseases know that their tomorrows aren't a guarantee so make today the best today that you can make. Do not let fear get in your way. Do not be your own worse critic.

REMEMBER, if someone says they do not ask you to spend time with them because "you always say no or you are sick and probably do not want to go," educate them on how you really feel. If they never understand, then they are not worth wasting your time or energy on. REMEMBER that doctors cannot predict your expiration date based on pure statistics. Yes, most persons with Metastatic Breast Cancer live on average 3yrs and most patients with Metastatic Breast Cancer do not make it out of an ICU twice and live despite what you see or hear from your cancer network (doctors and support group). Try to be the person to skew the stats given your current ability. Sometimes its the cancer truly taking things away, but it has never hurt anyone to try to gain back those things with mental and physical perseverance AND asking for help from your family and medical providers to try to improve your abilities even if the journey back to feeling better may never happen or may be hard as heck. No one ever died from trying their best and keeping hope alive. Today I choose to do the best I can and to continue to hold onto that glimmer of hope I have lost and keep finding again on multiple occasions. Today it was found due to memories of lessons and memories of what I have gone through and survived due to hope, perseverance, and asking for help from anyone even if sometimes I do not always hit an optimal goal I set for that day, at least I did my best to try to reach that goal and never gave up.