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.

Updates in my PAGES

I worked hard this morning and made some updates in my PAGES. (Treatment, Bucket List and Toxic Cosmetics)

Most Notable changes are in my Toxic Cosmetic Page.

I am currently working on a blog regarding the debate over whether Cannabis is the hidden cure for cancer. I will show the limited research and also share my perspective about this "rumor."

When a Cold feels worse THAN Cancer

I seriously had things to write on here about for two months. Two months I have delayed writing. It has gotten to the level of procrastination that I forgot about things to write about that are related to living with cancer, but not related to how I am handling my current medical treatments. Chemo brain is real & honestly I try my best to remember everything and take time out of my day to discuss the happy past memories with my husband and I do write, read & craft, which have been shown to help with memory and attention for people who are losing some of their memory due to illness or in my case due to the stress from having Cancer and the stress affecting my memory.

I would like to note, that one of my few good mets sisters, Amanda, whom is still alive and able to write on her blog touched on some of the topics that I do remember wanting to write about. One of her recent entries that she and I spoke at length about was how Good News really feels when you have a terminal illness. I did share my personal experience with this back in my blog entries from this June. I feel that Amanda wrote a better blog entry in August about what it really feels like when a Metastatic Cancer Patient gets Good News. How Good News Really Feels Like .  I really encourage you to read her blog. Her most recent post also discusses the whole theory that people think Cannabis is the hidden cancer cure & she also wrote about how it feels when people ask "How did you get Cancer." Read her blog, she seriously read my mind from her home & wrote lovely entries on all topics.

I do have other experiences and opinions about how I feel when I get Good Cancer News, the reality of holistic treatments & cannabis as a cure all for Breast Cancer, and also how I personally feel when people ask me How I Got Cancer, which for me is - "what mistake did you make, so I can avoid getting cancer." These are some of the topics I hope to address this month as I want to dedicate more time to writing my blog entries about my feelings, insight and the medical research to support some of the topics I will write about for myself, my support network and for any breast cancer patient, advocate or doctor. Well as you can see I wrote 3 paragraphs on why I continue to plan to procrastinate. I am the best procrastinator, so I am trying to hold myself to writing a blog entry at least every other week until I have a health change to share or I run out of topics that I feel passionate about. I have faith I can take 1-2hours out of my day to write and proofread my blog entries, but for today I do want to share how June, July and August went with my health.

I guess I will start with July and then bring us up to today.

JUNE 2018 HEALTH UPDATE
         Through the majority of June 2018, I was dealing with low neutrophils. Low neutrophils, means I also had low white blood cells, and my immune system was pretty bad. I had to end both of my Xeloda cycles early, so I could get injections that boost my white blood cells & neutrophils. The point of these shots were to boost my immune system, so I do not get sick and have to miss any of my IV Chemotherapy. The shots are the only way to boost the white blood cells and neutrophils. No foods are known to increase WBC or neutrophils. You can take foods high in probiotics and prebiotics to help your immune system, but they really do not help if your WBC count are a 1 & normal is a 4 or above. I was hitting a 1 after every 2nd week of Abraxane, was given my 3rd week of Abraxane, and despite getting three shots to boost my cells every time, my cells never got much higher than a 4 or 5 and would continue to drop even with a week off of my IV Chemo and stopping my Xeloda mid cycle. Lets just say by the end of June my immune system was really taking a hit, I was not allowed to go out in crowded public places without a medical mask, and I was drained beyond belief so I had to sit on the couch even though I really wanted to be out enjoying the weather.

JULY 2018 HEALTH UPDATE
   As you can see in June my immune system was really getting beat up. Usually if this happens in the cancer world, a person is at a high risk of developing infections. I took every precaution to avoid germs - masks, hand washing, hand sanitizing, and keeping a super clean house. Despite taking all of these precautions, around July 4th I began to cough up green phlegm and I had a fever over 99.9F. My fever was not going down with antibiotics or tylenol, so I asked Kyle to take me to the Riverview ER (they work with MSKCC in Middletown and serve as the local hospital for that clinic). By the time I got to the ER, I began to experience respiratory distress & shortness of breath, continued to have a nasty fever, had low blood Oxygen at rest and a very high heart rate. I was on my 4th day of ZPack and my symptoms were not getting better. I was admitted to Riverview where I was given scans that showed signs of Pnemonia & and Lung Inflammation. My lungs continued to decline in functioning, I was unable to sleep, started to have panic attacks that I was going to have to relive the hospitalization at NYP-Cornell last fall and that this time I may die because it had to be the cancer. I ended up blacking out from Panic Attacks for three days and my memory of the day I was admitted is also very hazy. This had to due with my anxiety and lack of oxygen and blood flowing to my brain, so my brain went to sleep to protect itself.
  I did wake up from my haze. I found out that the scans showed SIGNIFICANT IMPROVEMENT in my Lung Tumors, Pleural Tumors, and Lymph Nodes. I did celebrate this news and gave my oncologist a "pound" in the hospital. Unfortunately I still had some nasty inflammation, an infection and I was not eating and lost 15lbs in the short time I was sick from 7/3-7/10. I lost a bunch of strength and I was back on oxygen. I felt like although the cancer was shrinking, my body was failing me now & I began to have panic attacks that I would never gain back the weight, gain back my strength or come off of oxygen.
  I was in the hospital for 10days and left the hospital on 1L of Oxygen & I was on 70% of oxygen during those days my brain took a vacation. I was very depressed and upset that despite the cancer shrinking, I had to work super hard to get off of the oxygen and also regain leg mass & strength. Long story short, two weeks after I was discharged I had gained back 10lbs, was able to do my normal routine without getting out of breath, and I was off of oxygen.
  Unfortunately, this illness and hospitalization caused me to also stop a Xeloda cycle early and then I missed a full cycle of all my chemotherapies. Needless to say I was very nervous that the break from chemo, although it allowed me to heal, would allow my cancer to grow.

AUGUST 2018 HEALTH UPDATE
  As we approached August I was already about to complete a full round of my IV chemotherapies and the two cycles of Xeloda, but my neutrophils took a hit and I missed my 3rd week of IV chemotherapy and I had to end a Xeloda cycle early. At this point, my doctors came up with a plan to help me not keep missing my 3rd week of Abraxane and to also to not have to stop my Xeloda mid-cycle, so I could take preventative injections to boost my WBC and neutrophils on week 2 of Abraxane, which is also my off week from Xeloda. Turns out that worked!
  I also had my 3mo brain MRI, my first Full Body CT in 6mo, and first abdominal ultrasound in 6mo. Overall, my medical team was very pleased with the scans.
  The Brain MRI did show two new tiny tumors, which my Radiation Oncologist suspected could be due to all the chemotherapy breaks. We decided to rescan my brain in 6 weeks in Mid-Sept. My Radiation Oncologist and my husband were both concerned about the two new Brain MRI spots. On separate occasions each one of them asked my medical oncology team to do a Full Body CT Scan on me to make sure the treatments are working on my body and that there are not any new tumors in my body as there were those two new tumors on my Brain MRI.
  Now after enduring a bunch of my rambling about my health this summer, here is the GOOD NEWS - I will just say that the full body CT Scan showed significant regression all over. There even was regression on my Chest CT when compared to the emergency Chest CT I had in July at Riverview. This means we will continue my current chemotherapy into the next three months or until I need an emergency scan (lets pray this does not have to happen). We also figured out how to avoid my neutrophils from dropping too low, so I can now receive my 3rd week of Abraxane and 2nd round of Xeloda for every cycle going forward.
  In summary, I began the summer hearing excellent news about all of my lab-work showing tumor markers dropping significantly since starting Abraxane, Avastin, Xeloda and Xgeva. We also went to Riverview to get an Ultrasound of my abdomen to see if there were any pockets of fluid that could be drained. The CT scan did note Ascites, but reported that they were much smaller and fewer than my last Abdominal CT Scan at the end of January. The ultrasound showed tiny pockets of fluid but they could not be safely removed. I still have a slight beer belly, which is due to the continued tumors in my omentum/peritoneal lining and the tiny ascites that remain. The goal is to allow the chemotherapy to continue to work on the ascites and tumors, so my stomach will go down on its own.
   The biggest disappointment has been the beer belly that I have had for a year, but a year ago it was significantly larger and draining 3L of fluid every week or sometimes twice a week. What I can take pride in is that I haven't had to have my abdomen drained in 8mo and there continues to be shrinking tumors in my abdomen and my stomach shrinks slightly every chemo cycle. I will take that over a growing abdomen, more tumor and needing to get my abdomen drained just to be comfortable. Granted I really hoped it was just one pocket that we could drain and that I would have my flat stomach back, but it may take some time before I can wear a form fitting top without some A$$ asking if I am pregnant. I do not even want to discuss how upset that makes me. It hurts my confidence and also reminds me that I won't ever be pregnant, but I have been pregnant with deadly tumors. Sometimes I can brush that off, but sometimes I end up crying due to not being able to wear a lot of my clothing that I love. I have found ways to conceal my abdomen so I at least can feel confident in a loose top.

SEPTEMBER 3, 2018 - How I feel today
   Granted I had great scans in August, which makes me happy, but there are still feelings of fear and worry of "when will this stop working to fight back the cancer" or "how much longer can my liver and kidneys handle these toxic cancer treatments before I begin to lose liver and kidney function." I try my best to discuss these thoughts with my doctors, therapist, family and husband. Through talking it out and then redirecting my thoughts to the positive progress I have made with my health over the next year is incredibly helpful.

Caitlin and the COLD
   Also I want to note that I am writing this entry with the first head cold I have had in three or four years. It sucks. My head feels like a balloon. I actually somehow prefer the chemo sickness and cancer pain, I guess that is what I have gotten used to. A head cold makes it nearly impossible for me to function due to the pain in my sinuses, ears and throat and the runny nose and a throat so sore I can only eat liquids or soft food.
  I was hoping this was just an allergy thing, but my symptoms did not get better with Zyrtec. In fact, my symptoms just got worse from Friday to yesterday. They were more tolerable due to taking OTC medication, but my throat was not improving and my nose was running like a leaky faucet. I told myself I would give myself 48hrs before I either go to the ER (if I had a fever and/or colored sputum) or take the emergency ZPack my pulmonary doctor gave me for colds or sinus issues that had no fever. Lucky for me, I had no fever or colored sputum, so we avoided the ER. The most annoying things about this COLD is that I am literally couch bound to recover and rest, I have literally gone through two large boxes of tissues from Friday to Yesterday, I have a bloody nose from all the tissue usage and I also missed out on BBQs for another holiday this summer.
    I woke up today feeling worse than yesterday, I literally was crying that I could not handle a cold, put myself at risk for a possible infection, go to an ER without having an anxiety attack, or deal with the fact that a stupid cold I obtained due to a crappy immune system from my cancer treatments has made me a prisoner in my own home who has missed out on the last of the summer BBQs. Today I felt I  worse due to only getting four hours of sleep, which makes symptoms worse in anyone because I was unable to rest and recover with proper sleep. I decided that it was time to take an antibiotic and see if that helps.
  It has been 4 hours since I took my pain reliever, zytrec and antibiotic and I already have less sinus and ear pain. My throat remains sore, but if my sinuses are not in pain, like they have been for the last two days, I am sure my throat should be better in 1-3days of rest, hydration and proper medication. If I get a fever after doing everything I can for a cold, then I will call my doctor and go to the ER. Lets hope that does not happen and that I do not have to endure the anxiety of having to go to the ER and getting admitted to the hospital.

ok I need to rest. I should have left this blog for another day, but if I kept procrastinating, it would have never gotten done. Also I did not want to worry any readers wondering what happened to me since early June. I mean when I have read other cancer blogs and the writer goes MIA usually something bad happens, so I wanted to make sure people know that yes, Cancer sucks and its bad, but my cancer is better and for now I am trying to just combat a cold.

A Moment of Weakness

A medical update, followed by a Me update.

MEDICAL UPDATE
To revisit my last post, I would like to say that the insurance transition worked out and now Medicare/MediGap have been handling everything very well.

I got really good news last week. I went into NYC to see my Sloan Oncologist, Dr. Vahdat. I enjoy seeing her, sometimes the news I get delivered is bad like most recently I fell down a rabbit hole of health, kept a smiling face, was told to be positive and not to be sad about the fact that a girl who's health was perfect was slowly declining from July 2016 - Jan 2018. Dr. Vahdat always breaks it down to me "I have not given up on you, that is why I am willing to be aggressive with your disease, but your disease was outsmarting us way too much." I think she might have kept the disease at bay with the trifecta chemo she and my NJ Sloan Oncologist, Dr. Wong, had come up with.

Well this combo has taken a body riddled with cancer and has shown that in this case, God is still watching over me. The best proof of this is not just my shrinking stomach, lack of ascites, lack of swollen lymph nodes up my neck and clavicles, dual pleural effusions, or dropping 02 saturation. Granted these are only a few of the physical improvements both my doctors agreed show that the treatment is working. So here is the news. All three of my tumor markers - CEA, CA-15.3, AND CA-125... were all somewhere in the mid-4,000s to the mid 5,000. Since the markers were so high, I promised myself in May 2017 that to save the mental sanity I have left, I won't look at the tumor markers until I see Dr. Vahdat. Well I saw Dr. Vahdat and all 3 of those tumor markers have dropped to the low 400s. THIS IS THE LOWEST THESE MARKERS HAVE BEEN IN 18MONTHS. I am speechless, blessed and thankful. As we all know this can change next month at my next follow-up in NYC, but I keep praying that maybe I will eeek out more time than I was given last October (not by my medical team).

I AM NOT UNBREAKABLE 24/7
This is long, but I also think its important for me to write this out for myself and also to educate the world about how your "Superhero," "Strong," "Fighter." etc, is not what you perceive her to be. I began to think about this again when I noticed an onset of depression shortly after hearing that great medical news. You would think that with this good news, I would have had a parade, a party, or even just screamed at the top of my lungs with happiness. Instead my stupid depression and PTSD issues started to sneak into my head and I literally spent 3 days miserable on the inside until I broke down this past Sunday and I needed to talk to someone.

Despite knowing that I needed to speak with my mental health team, pray, and journal to release these feelingsI kept saying "Enjoy the good news, the beautiful weather, go plant more flowers, go on a walk, do some crafts, watch some TV, go shopping, visit the board walk to walk and then sit, and to workout with the physical limits I have." Every little distraction I had, I had a viable excuse not to do it, at the time those excuses sounded viable and made me feel more depressed and fearful and anxious than I already did. I think the worst thought was "I do not deserve this Cancer, what did I do wrong, why me, why me my life has never been easy 24/7 and now I am not sure if I will ever know what an easy life is, because I honestly can say its been decades where I either wasn't stuck hiding away my anxiety and depression, which I channeled into being PERFECT - NO HARM WILL COME TO ME IF I DO EVERYTHING THAT DOCTORS AND TEACHERS AND PARENTS TELL ME TO DO TO AVOID HARM.

In 2010, I actually was hitting breakthrough mental changes, agreed to go back on medications, felt joy, and actually did not want to spend everyday I had off from school or work at the GYM for 2hours and then on my couch, bed for the rest of my day feeling fucking sad. 2010 I noticed I wasn't forcing myself to leave the house, to paint on a smile, to pretend my life was ok while treating people who had similar issues.... I could go on and on at how depressed I was and how greatful I felt when I saw the light, began to set career goals etc. That changed when we found the lump, I wilted back into the anxious mess. When I am anxious, I retreat, I avoid, and I am scared to ask for help.

There has been very few times from 2010-2018 where I have felt that anxious, which brings me to feeling  broken, alone, lost, sad, and waiting in fear for the next tumor or other bad scenario to eat more time from my life. I can count these moments on one hand. Yep. I have had days where I was sad, anxious or angry, but the emotion passed and I was able to work through it. Living with cancer for 8yrs and the fear of recurrence for 3 of those years, which turned into this debilitating fear of death. I try not to think about it, but when I think about death, depressive Cait takes my hand and brings me back into the desperate, familiar hole my mind spent a decent amount of my life in. Trust me no one caused me to be depressed or anxious. I literally remember being 9 and having a panic attack in my bed room and puking instantly. No trigger then, out of no where. Then with small obstacles and the loss of many family members to Cancer, I felt that the only thing I could do was push push those feelings away and avoid. Look I knew nothing about therapy or psychiatry and how that field would save my mental health & eventually become my passion, because I wanted to give back to people something I know and have experienced and seen work. Unfortunately, I would spend years to avoid dealing with these feelings with great grades, do everything in anticipation to make my parents or friends happy and ignore my needs, drown myself in sports, and always have great group of friends so I can hide amongst the conversation without showing how I felt about myself. Eventually I found friends I could talk to and a husband I could talk to & learned that I cannot make anyone happy, I can only try to find ways to get myself happy.

Last but not lease a wicked sense of humor. Using my sarcasm and humor has become the best way to hide my feelings especially if its a joke about an issue most people would not laugh at...The best example of this that I can remember was the first time my hair was growing in. Inside I felt like I looked like a hot mess, I did not recognize myself and all I saw was a bad 80s perm-mullet. In humor, I started to refer to myself as John C. Reilly. In the picture below thats what I would laugh and say well at least cancer made me a doppleganger for John C Reiley with my awesome hair.

I hated that hair, I hated that it fell out and I hated that I had to wait for it to grow in only to lose it 3x in 2017 and again in 2018. I hate being bald. I am not Professor X or Powder, which I joke around and say I am. Under those jokes is a girl, who does not feel sexy when she touches her face. I am a girl covered in scars, I was stripped of my hair, my flat amazing stomach I worked so hard for... I could go on and on, but the reality is I started to feel confident about my looks and cancer in 2015, which was slowly torn away with the brain tumor and craniotomy followed by the medical nightmare after medical nightmare.

I could go on and on about these feelings in the past, but recently my humor is not even masking how I am feeling. So I am left feeling broken, vulnerable, exposed, and alone. You can feel alone and be in  a crowd of people who love you. For me that aloneness, is losing the ME I always dreamed to be to a disease. That me will never magically come back if the cancer goes into remission (which would be amazing, maybe even cure me of these stinky thoughts), the me I thought I would be was taken from me, I had no choice. I thought I had choices but my health got in the way of anything I tried to reach for in my career and I retired at 32. I can't mentally handle being a therapist when I was falling apart physically and mentally from a disease that slowly is stripping the world I was trying and hoping to build for myself.

I am not sure what to say. I dislike that I no longer have the CHOICE to have children with my husband. I am sadden that a career I loved, I can no longer do unless I want to lose myself in the process. I couldn't help people when I was struggling holding my health together. I will never buy a house. Our savings has literally gone to medical bills and to pay other bills while Kyle remained out of work multiple times to be my primary caregiver when only a disability check & unemployemnt was coming into this house that was orginally built based on a household with two people who had stable work and appropriate salaries and a SAVINGS.

Cancer has given me scars, turned my body into a human science experiment, took away the abilty to be the athlete, took away the kids I will never get to raise, I will never get to be a Mom like my Mom was, taken away this never ending pool of energy, chased away people whom I thought were my friends and family, has made it hard to focus on reading books because chemo fried my brain, and it has taken away that idea I held for years about growing old with Kyle as something that made me happy and smile. These thoughts I know trigger more depression, hopelessness and fear.

I am sorry readers. I have been trying to end this on a POSITIVE NOTE, but I can't. I have no energy to even try to be POSITIVE and I know that something needs to happen to get me out of this mental rut. I hope by recommitting to therapy, I will feel much better soon. Sorry, people. But YAY Cancer is shrinking.

SADNESS OUT 

Insurance Companies Made my DAY 💩 show

You would think that by the 11th dose (not round, I am almost done with the 4th round of this combo) of this chemo combination I would hit no roadblocks....

1. No premeds were ordered. I am thankful my attention was made to focus on my medication preparation and I asked why the steroids and Aloxi went in so fast...hour wait finally got premeds and crisis 1 averted

2. I have become a Medicare patient and have been lucky to experience the awesome crap show my clients always dealt with is...Perscription coverage and coverage of the 20% Medicare does not cover (bet you didn’t know that!). I paid for a new horizon medical called a medigap plan and a prescription plan called Part D of Medicare...there are like 8 parts of Medicare you could be eligible for. Regular Medicare only covers Hospitals and Doctors. Apparently an oral chemotherapy is NOT covered by my prescription plan when I was sold the plan and told all I needed was a form filled out and a preauth... Horizon had no clue what they were talking about...

Anyways so 1 of my 4 Cancer medications is a speciality drug that gets mailed to my home. I spent my whole chemo session explaining this shit show to three nurses, Caremark, my mother, my husband, Horizon and finally the person who fixed this (after the Sloan nurses contacted my doctor) was a financial rep at Sloan. After another draining call to Horizon who said that I am now officially enrolled in Medicare Part A&B, Medigap (Part C that covers 20%), & a Prescription Plan that will back date and pay for my treatment since May 1, 2018. 

So YAY right? Not yay

3. Sloan calls to tell me that this Medigap Plan and Prescription Plan do not cover my Specialty drug, but Medicare part B does cover 80% & I have to pay 2,000+ of what isn’t covered. After I was explaining that I do not have 2grand every month to spare and would have saved more if I kept Cobra until December, Sloan offered me a grant to pay for my Xeloda and will have it shipped from their pharmacy in under 12hours to my home. They said that once I get my Medigap Card they are going to resubmit the claim for this drug and try to get it covered under Chemo since that is how Part B of Medicare is apparently covering this drug

So I am tired and am probably using the worst grammar in this post. Sorry guys it’s a rush post and is too long to do a quick Facebook update.

On top of this we did laundry, groceries, small errand for my moms wedding, finally ate food and my visiting nurse came...

I did not get a nice shower until 730pm.

I did not get to relax after a day of Chemo, tears bc I felt like Horizon lied to me, and anger that sick people get screwed daily from the insurance world...I finally sat down at 8pm.

I am exhausted

I have a headache from the stress

I am grateful that this all worked out. My gram always said that and she is right. The emotional and exhausting journey to get to that “worked out” point is sometimes too hard to avoid and calm down and turn my face to god. I am just glad that my angels in heaven worked with God and had Sloan Kettering help me again.  

Anyways in good news my recent brain MRI showed 9 spots compared to 20. 8 of them have been shrinking and one is stable. No radiation and we continue the systemic therapy which continues to work on my brain. I am also off of all oxygen and my blood oxygen is back up to 96-98%. I also joined a Liverstronv Fitness program for cancer patients who need to regain strength in treatment. I started it two weeks ago and have gone four times and feel very proud of myself. Tomorrow is day 5. I have not had a body CT scan but my doctors say the labs are good and my clinical presentation continue to improve. Most likely we may scan if my labs go into the Danger ZONE or if I ask for one in June for my follow up at Sloan in NYC. 

In the meantime I will have three more doses of this chemo and two more cycles will be finished before I see my doctor again. I am praying my miracle continues to work. I just want this to be a good summer. Not like last summer when I had no energy to leave my home alone for more than an hour. Not like the summer prior where I spent the last half of it throwing up and brewing a brain tumor. I want to go in a pool. I want to get some time in the sun. I want to go to the beach. 

Ideally I would like to go into the water but .... that wound from September is still here and is finally closing it’s about 2x1cm now, but as long as it’s there I can lay out and put my legs into water. A shower shield will not withstand the Atlantic Ocean or a pool...but I want to have this thing healed. Also the belly is still shrinking. I now look like a shinny girl who likes to drink beer. It shrinks every week and my clothes finally fit better. I finally don’t look like a egg person at 98lbs with 20lbs of tumor or fluid  in my belly & body. I am finally 119lbs if real mass, look human, don’t look pregnant with dying cells and not the baby that people would and probably did assume if they didn’t see my bald ass head...crap I looked sick in Sept.

Anyways.... thank you god for the miracle of health. Thank you for making today work out in the end. Thank you for shrinking my belly. Thank you for letting me have another year of flowers sun and sand. Thank you for letting this chemo work as long as it can and extend my life as long as this cancer will allow. I know one day this will kill me. That sucks. It just sucks. I am not ready to die and God knows it. I have a few more things I would like to get done here for God and my family before I am sick  enough to go. 

A Quick Medical Update

I started Abraxane (3 weeks on, 1 off = 1 round) and completed the 1st round. I start my second round this coming Monday. I also began Avastin and will be getting my second dose on Monday. Xeloda also continues to be ingested despite the havoc it is wrecking in my poor digestive tract. I just have to say that the nausea is a 8 out of 10 on this combo & the fatigue is about a 5 out of 10. Literally I spend a lot of time praying that my antinausea regimen works & it has not curbed complete pukage. Therefore, we have to get it adjusted for my pre-medication and the medication I take at home to avoid puke. I have puked way too much since starting Abraxane with the Xeloda.

Unfortunate for my quality of life, but I want to be here a long time, so I am putting up with the side-effects and looking for treatment options for those side-effects to improve my quality of life. The reason why I will put up with this insane, but ingenius chemotherapy combination...is that I have only had good news since starting all three drugs. Here is the good news in no chronological order:

1. My 6wk brain MRI showed stability and regression. This MRI was done a week before I started the Avastin, so we just saw what Xeloda & Abraxane have done together. I won't need brain radiation & will get another f/u MRI in 8wks.

2. After 1 week of Abraxane both of my tumor markers dropped 400 & 500 puts. This puts my 3,000 something markers into the 2,500 range. I have a lot of cancer, so my labs are pretty scary. I am curious to see what my markers are this coming week.

3. I am off of Oxygen in the home & when out in public running errands or going to doctors. I still have to wear oxygen when I sleep and workout. Slowly but surely I will be off of it 100% if my lungs continue to improve with chemotherapy.

4. Everyday and its more noticeable every week but my giant ascite filled stomach has shrunken so much it can be hidden in clothes. I still am not my normal size, but I keep praying for the tumors in my abdomen shrink.

Honestly, all these changes are amazing. But I am human and there are moments each day where I start to get down about various thoughts about my cancer, which are SOOO not helpful for my mental stability. I start to get upset that I still have cancer, my abdomen is not very comfortable to deal with because of the tumors in my abdomen lining, my abdomen also is still larger than what would be normal & I feel its the last reminder of how sick I was. I just want it to go away & hate looking at it & refuse to buy any new clothes beyond sweats and baggy tops with leggings, because I want to hide in my clothes. I also am bald, which I am surprisingly OK with since its the 4th time my hair has either fallen 1/2 out or all out. THAT I CAN DEAL WITH, but on my worse days I cannot even deal with that.

So do I cope...I have to force myself to relax myself as I begin to explore the anxiety inducing ICU stay and how I looked when I first came home. Then I start to look at all the changes that have blessed our little family and I smile. I was told by a consulting doctor to get my affairs in order and that my treatments all would not work for any period of time anymore. I apparently was told I was too sick for trials and that no treatments have worked therefore none will. I left that appointment wanting to prove that person that I am not a statistic, but a person who determines where her fate lies and that her hands are in Gods and he has not given up on me yet. So I start to tell myself that it is pretty amazing & shocking that 4months ago I had a traech, a lung drain that was draining 1/2L of fluid, an abdomen filled with almost 3L of fluid, swollen legs, on oxygen, swollen feet & was unable to wear normal shoes, & I weighed so little stretch pants were baggy on me. I have since had that traech removed & the hole has healed very well. The fluids both in my lung and abdomen have resolved. My legs are no longer swollen and heavy. I am off of oxygen 2/3 of the day. My feet are no longer swollen and I can fit into my favorite boots & sneakers. I have gained at least 20lbs. I am still thin, but my arms and legs and face and butt have restored themselves into a healthier body.

I still have a decent amount of recovery I hope I get to see happen. I will do my best from my position to care for my nutrition, fitness, and mental health. I will continue to be a smart patient and will always work with my doctors on finding trials or treatments...even if that means sometimes I may have to do the search myself. My wound still needs to heal. I wish I could yell at the nursing staff who let that wound even happen, but there is no point in yelling at something I cannot change. I just have to keep eating well and keeping it clean with my nurse and it will heal. I asked God if he could heal it before Kyle and I may go on a vacation at the end of April. I also need to come off of oxygen 100% before we can make a far trip, so hopefully my body continues to get stronger. I will gain another 10lbs even if that means I have to eat a brownie every night. I will also continue to pray that my abdomen will shrink for comfort and healing. I am getting so close to normal CAITLIN that I can smell her just around the corner. I hope I get to be normal CAITLIN again even if its for a day or two. I just want to be the fit, healed, cancer fighting vixen with a flat stomach that I was before that whole 40day hospitalization that changed my life.

What Has Happened in the last 30days?

I have not updated my blog in a month. Personally, I was trying to spend less time on my computer and phone & focusing more on my time with Kyle and my family. After the death of two of my best friends this past year being on social media has been very difficult. I keep wishing I could text Aziza or Hayley, but I can't because stupid breast cancer stole them from the world. Only amazing memories of these two gorgeous ladies live on & I have to admit being off of Facebook isolates me from friends, my online support group and seeing if anyone I know who also has Metastatic Breast Cancer has died. With each person that dies in the group I wonder when will be my time. This type of thinking has been unfortunate for my mental health, so to be happy I withdrew. In the 30days I vanished things have changed and things have gotten marginally better.

Scan Update:
I had my 3mo CT scan on 1/29/18. It showed regression everywhere, but my liver which showed progression. My liver enzymes were on the upward swing & my doctor and I both are concerned if there is any change in my liver mets. My two oncologists spent a week debating on increasing my doses of Ixempra and Xeloda, keeping me on the same regimen for two rounds and rescanning OR changing my IV Chemo, because the huge impact on my recovery happened when we added the oral Xeloda to the IV Ixempra. In the end my doctors decided that Ixempra did it's work, it got me off a respirator and out of a hospital to my home, but it was time to change my IV Chemo to focus on more regression and work on my liver and brain. They also looked into immunotherapy trials which my doctors feel are the next step if we can keep my brain stable and regressing with chemo.

Brain Update: 
I am not having radiation done to my brain at this time. I actually think this is a smart idea to keep my body away from more radiation toxicity and allow Xeloda to continue to work on my brain. Xeloda actually crosses the blood brain barrier, while most chemos are too large of a molecule to go into the brain's blood vessels. The blood brain barrier protects our brains from toxins and well CHEMO IS A TOXIC CHEMICAL. I am switching my radiation team to Sloan also. My doctor can coordinate with the team at MSK easier and they also communicate better with me.

Lung & Fluid Update:
My PleurX catheter was removed on 2/9. My lung stopped draining fluid, which is a sign of regression, so we removed the PleurX. It is nice to have the drain and Trach out. I am unfortunately still on 1L of Oxygen. I will be getting a portable Oxygen Concentrator tomorrow which is the size of a small cross-body purse. This will allow leaving the home to be easier. Right now, I have to haul small oxygen tanks in our car & we have to time out the oxygen containers with any trip we take. The portable concentrator is battery charged and does not need to be refueled with an oxygen tank, it feeds the oxygen to me based on the breaths I take through my nose. The fluid in my abdomen has been checked another two times. I no longer have ascites, but my belly is still distended from the shrinking (YAY) 9cm tumor that chose to reside in my abdomen wall last May. I just want my belly flat to wear a dress by June. Right now I hide it with leggings and big sweaters, its literally not big at all, but I am all but 120lbs and 5'6" so a belly on me is like pregnant lady walking. I hope that changes as I start the new IV Chemo and I continue to gain weight. I have put on about 20lbs since October. My goal is another 5 by March and another 5 by April, so I am back to weighing 130lbs. The wedding and progression of my cancer last year made me super skinny, too skinny IMO. I am working on that with food and continued practice of my physical therapy & re-introduction to exercise.

Chemo Changes: (the only crappy thing beyond still having the bed sore wound...)
We are keeping me on oral Xeloda 2,000mg a day for 14days and 7days off. I keep taking this drug orally until we see lung or abdomen progression. Seems like the Xeloda is really tackling those two shitty tumor parties. We added Abraxane weekly to start to tackle the slight progression and to continue on my (hoping and praying) journey to getting off of oxygen. They started that Monday and I already had a puke fest when I got home. Seems like the drugs that don't need pre-meds I need pre-meds, so next week they probably have to give me an anti-nausea drug before or after my chemo. They are also going to add Avastin every 2 weeks, starting either in two weeks or on my second round of Abraxane. The delay in Avastin is due to my insurance, which I honestly am not upset over, I would rather know what side effects are Abraxane & Xeloda V. the Avastin with Abraxane & Xeloda. This means more days at chemo, but the whole chemo day was 2hours including labs, meeting with my oncologist, and getting the drugs. My lab-work also looked better yesterday, so despite having liver progression, my enzymes dropped or remained stable, my carbon dioxide in my blood is normal and my protein in my blood is finally normal. It is not so secret that I am grateful for Xeloda and the doctors who created it. It has been the only chemo to cause regression and 1 of the 4 treatments that caused regression or stability out of my 11 types of chemo and anti-hormonal combos.  Xeloda has saved my life twice. Once in 2015-2016 and again in 2017-2018. I do not know how long it will keep working, but I am glad God put people on this earth to make the drug and having it work for me when I needed it the most. (if you are interested in learning about my chemo, I added hyperlinks above to direct people to the drug information)

More Good Things: 
1. Physical Therapy is OVER~ I graduated physical therapy on the 29th. It was a bittersweet ending, but my PT instructor had me doing modified burpees, pushups, weighted stair climbing, running in place with weights on my legs, lunges, squats, deadlifts and tricep dips. In his words - "it is time for you to rip out those 30min Tony Horton DVDs and challenge yourself once or twice a week and do my workout twice a week until Tony Horton becomes easy again. So...like a perfectionist always will do, we follow directions. I did my first Tony Horton p90x in 30minutes on Sunday. IT WAS THE HARDEST THING I HAVE DONE FOR EXERCISE SINCE I STARTED THE PT IN OCTOBER. I had to pause the DVD, skip two moves, workout slower, and I was left sore as all hell. I was upset that I couldn't keep up with even the modified chick, but I need to start somewhere and Beachbody workouts are no joke and I finished the workout and plan to try another tomorrow. When I can't do one of Tony's moves, I have been inserting one of the moves my PT instructor taught me. He was the best teacher and the VNA of Central Jersey is lucky to have Chris. He motivated me when I thought I could never walk without a cane, walk upstairs again, or get off the floor. He had me hitting all my goals and left me with one on the 29th - GET BACK TO DOING WHAT YOU LOVE SO DO YOUR DVDS AND START HIKING IN THE SPRING EVEN IF YOU CAN'T GO FAR. Ideally, I would love to be back Rock Climbing and Biking too, but I am fine with an easy hike in Holmdel Park or Hartshorne woods before I start tackling PA trails or the trails we CLIMBED (not hiked well we hiked too but I had to climb UP a mountain) in 2016 when we went to Maine.
2. We got a new lease. We spent months debating on a new Subaru Legacy or Forester. We ended up getting a Black on Black 2018 Forester in MY NAME, so I plan to be here a while as that lease is 3years. (you hear that fate I cannot die in the next three years because we have an awesome car I am legally tied to LOL)    
3. Transitions Hair Solutions rocks because I have long hair on my head again. Danielle, my awesome hairdresser who also drove into NYC to remove my wig last September, put back on my beautiful Cesare Reggazi hair. I feel pretty with my long hair. I just keep hoping I keep my brows and lashes on Abraxane. If not, Ulta did show me briefly yesterday how to draw on my eyebrows using a pomade. I am sure if I go back they can  show me how to draw on eyebrows naturally and also how to line my eyes to make it look like my normal black-brown lashes.

That is about it. Kyle is still sporadically working from home and is my F/T caregiver. We are still living paycheck to paycheck, but I am not sure if that is any different than anyone else in our situation. We are still running my GoFund Me page. My finances are running low after paying down some doctor debt and we need to eat. Even if you want to feed us, message me...I do cook again, but most of our money goes to my medical care and food. Our other bills were being paid by the gracious donations in our Go Fund Me.

I MADE IT !!!

TO 2018!!!

Guess I am proving stats, myself, and doctors (back in the fall) a little wrong. I thought I would be dead by now. I know that sounds morbid, but I have watched people - who had better health than me, been on less treatment than me, & statistically should be alive now - die in the last four weeks. Breast Cancer metastasis is a tricky demon. It hits you out of nowhere and there is noway of knowing if you will see tomorrow or not even if your chemo is going well or you only had 1 line out of multiple potential lines of treatment & you do not live beyond treatment 1. I feel selfish for asking for more days on Earth, when I watch my friends & cancer sisters die. My three of my closest mets sisters died this year and it hit me hard, just like in 2015 when I lost Aunt Kerry, Uncle Hank and Sheryl. I lost Aziza, MaryAnne, and Hayley and there is no good reason why they should not be here today breathing and living life to the fullest like all three of them did. Trust me I could list so many more online friends who shone in the sun more than I think I do and I feel they had more to give earth than I do (see the depression in me talks too much). Not one of them suffered from clinical depression like I do, they were happy like genuinely happy. I know what that is with therapy and medication, I wish I could be happy without help. MaryAnne did so much advocacy work it makes my little blog and administration of an Online support group pale in comparison. Aziza would never be scared to travel no matter how sick she was she walked around Europe and would host amazing large dinners when she was at her sickest. I spend my time watching Netflix and walking Target and reading books and avoiding hosting large dinners without recruiting the help of other people and slowly vanishing away out of the spotlight. Hayley would go out and have a blast and be out dancing with cancer. I live in cute leggings outfits and spend my nights watching movies and dancing into my bed to read a good book or comic. I ask God why did they go and why is boring NJ-born me, who felt like these three friends made me shine more, is alive and why are they gone. All I know is that they each encouraged me to BE MORE. I am shy, I prefer a book to a party, and I love to travel, but I do not plan any trips because I am literally afraid of my cancer. They would always have something profound to say when I would whine and try to retreat into my self created hermit hole. Maybe its time for this to change? Maybe I start living like my three friends or try to a little more each day...I think this sounds like a good idea even if its forcing myself to admit to my internet community how normal and boring I am yet I am alive.

Because of all the death I saw at work with addicted and/or depressed clients AND with my cancer network, my faith in God was shaky. I did not get why I was blessed with life nor did I understand what my purpose was on Earth and felt like I had no purpose of being here. God sent me some great friends & family who helped renew my faith in my Higher Power. I believe there is one God and he has a party with Jesus Buddha and Muhammad and he sends angels to us daily. Generally I am Christian, but I seriously think when I die I will come back as an angel, cat or newborn baby. I guess thats where I stood and I read Christian Bible verses for moments I spend with my higher power. Its what I felt more connected to just my idea of heaven is not the same as Jesus' heaven... I imagine him sending me back as an angel, cat or baby to help someone or help a bunch of someones. So because my friends and family kept praying for me in their various faiths, I had hope that prayer worked. I saw that I was given two chances to climb out of ICUs and regain great physical health. Most recently it took time and that required so much faith that Jesus and angels were with me daily helping me walk my purpose or my life path. This is where my renewed faith in God comes in. I thank God for giving me today. I am blessed for the tomorrows he has given me. I am thankful he has given me a voice to share my story in my blog, in an amazing online support group, and if I am lucky to meet you in person, I can hug you and we can both share our stories over a meal or coffee. I wish I could meet all my metastatic sisters and their families and give them a big hug because this disease sucks and none of us deserve to have to cope with it. Seriously, wanna meet? Lets hang because literally I am spending my time with my cat, decorating my home, cooking and reading books. I HAVE PLENTY OF FREE TIME TO HUG MY FRIENDS, FAMILY AND CANCER SISTERS TO HAVE A GOOD CRY OR LAUGH.

Some treatment updates are that I am still on Ixempra and Xeloda. I had my most recent chemo on 1/2 and my tumor markers were dropping, liver enzymes dropping & normalizing, and other important body functions are normalizing (lower C02 in my blood, higher protein in my blood ETC.). What this means is that as far as I know medically through lab-work and an ultrasound on 1/4 that showed no more ascites in my abdomen is that I am doing better than I was when I last blogged. I am also down to breathing 1L of oxygen, which is only 4% more than room air. My abdomen is shrinking, but its not flat and it upsets me still because it makes wearing clothes a challenge. I love fashion and winter fashion is my favorite and I cannot wear anything fitted unless its a hoodie with a pocket (somehow the giant pocket hides my petite bump). The bump is clearly the cancer in my abdomen wall and my abdomen was also so large and distended for four months that it may take a bit for those muscles to flatten out.

Honestly, I have had a large history of body issues, so I cry about this anytime someone brings it up. I cannot shut down the tears, I just imagine myself looking pregnant with a body that will never and can never get pregnant. Its quite depressing if you put yourself in those shoes, so I try to stay out of those stinky shoes and look at what I do have to increase my body self-confidence. So I repeat to myself the things I like about myself and also things I could change to feel pretty for the day, like getting dressed out of pajamas into a cute outfit even if its for one hour. Or I think about how the lymphedema re-normalized in my left arm, my feet are no longer swollen, my nails somehow can withstand chemo & I can get mani and pedis due to normal white blood cells. I also have a pixie cut of hair that desperately needs a trim, cut , and dye because SRS bleached my hair that grew back into patches of light brown & blonde straight coarse spots. My hair is quite funny, curly and soft and dark where no radiation was and brillo pad blondish where radiation was. Its going to be a trend or something OR I am just going to have someone who does hair dye my damn hair soon. In the meantime, hats and wigs with some awesome earrings do the trick in making me feel pretty for a day. If that doesn't work I think of all the gifts God has brought me in regards to medical care, friends & family, empathy, and a good sense of humor

I would like to say that I am blessed to be breathing and living and beat ascites back & also kept a normal, healthy liver while all of this was going down. Most of my friends have died in this situation. I keep praying to God and keep thanking him so I can share my story to raise hope in newly diagnosed and even people diagnosed eons ago who aren't doing well today HOPE. There is Hope anywhere, hope for less pain, hope for another tomorrow, and hope for a new treatment approved by the FDA or a new clinical trial. FIND HOPE SOMEWHERE AND GRASP ONTO IT AND HAVE FAITH THAT WHATEVER YOU BELIEVE IN WILL GET YOU THERE IF YOU KEEP THAT HOPE. I thank God daily for giving me a miracle with reusing a chemo, Xeloda, that got me to NEAD for a month and Ixempra, which got me conscious and off of a ventilator in September. I am thankful for an oncologist who thought to give this a shot, when every other doctor I spoke with said it would not work given my history of failing every chemo I was given since April 2017. I am thankful for a Physical Therapist who has helped strengthen my lungs and he keeps me imagining myself back on the Rock Climbing Wall and back Hiking in Hartshorne Woods (my favorite local hiking spot). I also have a Pulmonologist who believed I could get that traech out and come off of Oxygen (this may happen this coming week!!!!!).

Some more treatment updates are that I will see my Pulmonologist and Oncologist in NYC this coming week. My appointments on 1/4 were delayed due to the huge snowstorm we had. I see my Pulmonologist to possibly remove the PleurX drain from my lung because its draining under 100cc for the week total. I am also going to get tested to see if I can come off of Oxygen in the daytime and just use it for sleep. I see my Oncologist in NYC for my Xgeva shot and for a physical and to continue to discuss my lack of receiving SRS from Cornell.

Also, I have not had brain radiation 1mo after I was given a simulation and MRI to have SRS done at Cornell. I am pretty angry with them, so if we do hang out, I could vent about this for hours and then ask God to forgive me for being so nasty about the situation. I GET ANGRY AND THIS IS THE SHORT REASON WHY - They made 4 attempts to have my insurance cover it and the only way I found out was calling and pestering them. No one on my treatment team called my Oncologist about this because Sloan Kettering could have helped faster either via a trial or by doing the insurance authorization for the SRS since they are a Center of Excellence for Cancer, most insurances are required to cover treatment at those facilities regardless what is standard of care. So how do I KNOW that?? My oncologist at Sloan (she previously worked for Cornell) contacted a colleague at Sloan Kettering (MSKCC), Dr. Kathryn Beal, and I was able to see her in three days. I had to get a new MRI, which showed no growth since December (YAY!). I was called the next day and MSKCC already was contacting a trial company if I am eligible for the trial and also called my insurance for authorization for SRS. The radiation oncology team also contacted me to let me know this ASAP I did not have to call and email a bunch of people to get answers about my "potential" treatment. At that point I was tired of calling and emailing Cornell about radiation cost and scheduling that I was either going to explode on them or I had to stop calling and let it go. I chose to let Cornell Radiology go. Literally letting them Go. Any radiation or chemotherapy I have will be done at Sloan Kettering unless my Oncologist wants me to go elsewhere. I will follow this woman anywhere, she saved my life multiple times and is keeping me alive.

Back to the Brain Radiation update, they want to radiate 10 spots with SRS and told me I have 9 more spots that are not growing and Xeloda could be working on them. As of right now I am just hoping my insurance caves and says yes to the SRS & stops dragging me through the mud. The second option is that I get in this trial Dr. Beal may be able to get me into at MSKCC. The final option is we pay cash at Sloan and then submit the bill to my insurance company and hope for reimbursement of wha will be thousands of dollars.

Regardless of what happens I want to change all my oncological care to MSKCC, because Cornell radiation poorly handled following up on me about giving me the recommendation for Optivo, left it in my oncologists hands, and then I was hospitalized and left to become a vegetable with no follow up. What cracks me up is that they recommended Optivo again forgetting or not even listening to what happened to me in September when I saw my radiation oncologist in December.... it pisses me off and I do not have time for being angry at a treatment provider with my cancer care. I am also sooo done talking about this, so this is it about radiation and Cornell and Optivo and feeling like I was being forgotten at Cornell Radiation Oncology.

I will post a brief update later this week after I see my doctors this week & after I find out more about the brain radiation. I have chemo on the 22nd and I am holding onto hope that my treatments are still working and the cancer is not bubbling against the chemo and trying to grow again. I just want some good news in our life that lasts longer than a few weeks, we have had a hard year beyond our wedding and honeymoon. I would like to enjoy a trip where my cancer is not limiting me or knowing my cancer is growing & I have to start a new chemo the following week. I want  to see our first honeymoon on April 1 and give Kyle something paper lol. I also am dreaming for one more summer where I actually can enjoy the outside, because my lungs are functioning and get a freckly tan and swim in the ocean water.  I spent this last summer I indoors or on my deck at least 75% of the time, because I could not breath the humid air and I was unable to carry or walk long due to having pneumonia for a month and then having a decline in lung function from July to August. I would like to drive our new leased car we will be getting for more than a week. Crap I want to be cleared to drive. I hate not being independent. I pray for this every night. I figure if I wake up tomorrow, its one more day closer to a beach vacation with Kyle, one more day towards my independence, one more day closer to our anniversary with paper gifts and a newly baked cake top from our wedding baker, being my mom's maid of honor at her wedding, & what I am still doubting I will see is one more day closer to a summer, a REAL summer at the shore.