Well, I updated most of you yesterday that Jim and I finally got in contact with people who are proactive about cancer unlike Vegas. We haven an appointment with the UNC Oncology clinic next week to meet with several physicians including: Oncologist, Breast Surgeon, Radiation Specialist, Fertility preservationist, and Geneticist. It will be an all day event for both Jim and myself. Probably the most difficult for me to process out of all of these is the fertility preservationist. I will tell you why here in a second. I wanted to tell all those who donated and helped out THANK YOU SO MUCH! You have no idea how incredibly expensive it is to fly out, get the hotel, rent a car, and have someone watch your dogs all within a week notice. It is crazy expensive and you guys really made this happen for me and I have no idea how to thank you but through my blog and personal notes to you guys. We are trying to do this on the cheap as well, but even so it is truly a financial burden to do all this. It REALLY makes you question the healthcare system in America - I mean really makes you question it and how it can be fixed so people that are not as fortunate can still get decent care. The healthcare in Vegas is awful - you don't meet with a "team" of doctors - it is just scattered all over the place with the left hand not knowing what the right hand is doing. At UNC everyone is in the same wing and they all meet together a few days before your appointment. You will see the same 5-6 physicians for the duration of your treatment. Another excellent treatment center that actually reached out to us was in Texas, which from what I understand is number one in the nation in cancer care. I was also stunned that the Phoenix clinic never called us back or e-mailed us - so it has been interesting to see how this entire system works.
Now, onto why the fertility preservationist is the most worrisome. There is a strong possibility that my treatment may require hormone treatment or total removal of my ovaries. I waited quite some time and never had children. I was more focused on my career than anything, which included my education. I had planned on trying to have kids AFTER my MLS program was completed and I had traveled with World Health Org., Rubicon, or Doctors without borders - which would have put me at roughly 35 or so when I tried having kids. I thought I had plenty of time, but the realization for me that I may not carry my own child is extremely difficult. I mean - it all most feels as though the option has been stolen from me. This is a difficult pill to swallow for myself and I can only imagine how Jim feels. Also - the simple fact is, if I died, I left nothing behind - I didn't leave a single part of me in this world and that is VERY VERY difficult for me to face. My hope is that if I lose everything - my ovaries, uterus - I will be able to use a surrogate to carry Jim and I's child. The other side of this is that if I lose both of my breasts, I will never be able to breast feed my own child - I will never be able to bond with my child in that manner, and that too is very disheartening. I guess I should say I don't regret waiting, as I wanted to be ready to have a child, but I am also sadden by the fact that I may never have that opportunity.
Things are changing very rapidly in my life. The pain has started, and it isn't pleasant. Since my cancer is located is a strange spot - literally on the border of the pectoralis muscles and breast tissue in the 11:00 position - the pain all most feels like it shoots through my heart into my back. Also my underarm hurts pretty consistently as well as my left shoulder. My temperature is crazy, I get hot and then cold without warning all most like menopause. Yes, I do know what menopause feels like ladies and gentlemen - I was on lupron for endometriosis and I was only supposed to be menopausal for 6 months - BUT I was menopausal for 18 MONTHS!!! It was the worst time I have ever had with my lady parts. I was dry as the Sahara desert and super uncomfortable all the freaking time. I personally don't recommend it.
Please continue to keep us in your thoughts. We are doing okay, and my sister Ashley has been a huge supporter and I love her dearly for being the secure rock that I need. She will talk to me at 2:00 AM if I need her (and she has), and I am forever grateful to her for that. Jim has taken time off work to be by my side, so my small family is here for me whenever I need it and I love them dearly. Our families have been supportive and there for us when we need it most, and I am forever grateful to them.
All of YOU have been nothing but encouraging and loving, and I am so very thankful for each and every one of you who has read my blog and followed my journey. Many have reached out in ways that I couldn't reach myself. All of you went way beyond what I expected and you have no idea how much that means to me. i will NEVER forget that sort of support and my only hope is that if any of you needed the same support I'd be there for you as well.
I love you...and you are loved.
In the silence of my workouts, I think a lot. I think a lot about my past, my present situation, and the future. Today - I dealt more heavily on my past. Many times you can't help but think, did I do something in my past to deserve the present? Did I make a mistake in how I treated someone? Did I make a wrong turn somewhere? Did I make a horrible decision somewhere? The answer to those questions are of course....we ALL DO. We are all human and we don't always make the best decisions for ourselves no matter how hard we try to. I know I blew up some bridges in my past, and even though there were points where I tried to make amends for those, some people never fully or NEVER forgave me for those mistakes. I can't change those individuals and how they feel. I am sure many of them believe I deserve my fate - but this post isn't really for them. It is for those of you that are still part of my life, and there is an important lesson here I want you to take away.
Life is short and never guaranteed to us. If we think about the span of life - and how long it took natural selection and evolution to get us to this point in human history, we really are just a blip on the radar. How are you spending that small time you have? We are not immortal - all humans eventually kick the bucket, but the question remains, what did you with your life and how did you treat others? If there is one thing I want you to read it is THIS: Forgive. Life is way too short to live hating someone and holding a grudge against them forever. Some people live this way constantly, and I have no idea how you can survive living life in that fashion. To some people, that one mistake, even if the person tries their hardest to make amends with you, is a death sentence in their own eyes. Don't let your last conversation with someone be a blow out where you eventually hang up on them. Don't distance yourself from someone because "I don't want that drama in my life." Life is dramatic - things happen that we can't possibly control and all you can do is go with it. You can't predict what will happen to that individual. Don't be mad at someone who has no idea and never tell them what they did. I am not saying don't have emotions. We all fight and disagree, but even through all of that - forgive them - forgive each other. I promise you, if you live with hate in your heart against someone and they pass, you will live with that regret forever. If you don't - I honestly believe you have one hard and cold heart.
I have lived with people that I cared deeply for passing away before their time. There is one regret I live with. A friend of my died and the last time I spoke to him I was insanely upset with him. To this day I wish I had said I'm sorry and that he was a true friend to me. I will never get that opportunity. I am so sorry I was so upset with you Sean, I know you were grieving, and before I knew it, you died. He was my friend, and I tried to be there for him when his brother passed away (who I was also friends with and I myself was grieving), but at the time, things were such a mess, that I didn't exactly have the patience to deal with much more. All I can tell all of you is don't live with this sort of regret in your heart. I miss many people every day, but in most cases I was fortunate enough to have a good memory of them before their passing - and I am forever grateful for that.
Live your life with no regrets. Love each other instead of hating each other. Forgive one another instead of holding a grudge forever. Listen and communicate instead of hanging up because you are too afraid of confrontation. In essence, be a decent human being. Remember that love, anger, sadness, regret - these are all a part of life. Those who are smart learn from these events that shape who we are as individuals.
I love you - I forgive - I'm sorry. Don't let those three phrases be axed out of your vocabulary.
"let the waters of your life be smooth and constant"
Well, today's post will be rather tame in that most of my tests results are back and I have gained full copies of all my medical reports. Word to the wise: whenever something happens to you medically, especially if it turns out to be a life changing event, GET YOUR OWN HARD COPIES. I have my own personal originals of my MRI and ultrasound films on disk, that I then copied to my own personal external hard rive that is password protected. I have my own hard copies of all of my reports, which includes the MRI report, ultrasound report, and pathology report that I then scanned into my external hard drive and saved. Now each doctor that needs their own copy can get it straight through me and I can send all items same day in ONE PACKET so nothing gets lost in transit to the actual hospital. I have the ability and control to send everything all together. Right now I am just waiting on my mammography films, which for some strange reason those took the longest - roughly 3 days. Everyone else had the films ready within an hour. So if you are in the Vegas area DO NOT go to West Valley Imaging for anything. They are rude and don't get any of your medical records to you within a timely manner, and then ask a shit load of questions as to WHY you want them. I mean seriously? I want them because legally it's my right to have them. I guess when it comes to much of my records I am the biggest control freak and try to keep things as organized as possible.
So I have had to reconfigure some of my routines a bit. Normally I workout 4-5 days a week straight - sometimes with one rest day in the middle. Since fatigue has been one of my worst enemies (along with extreme insomnia) I have had to change my actual schedule. As of right now I workout 2 days and then rest a day. So basically 2 days on 1 day off. Today is one my rest days - which is fine in that I didn't get much snoozing done last night. Food is STILL a struggle for me. I am able to eat oatmeal, specific soups (chicken noodle and tortilla), bread, and oddly, clementines (or cuties). Everything else causes severe stomach cramps that I can't recover from very well. I'm losing weight pretty rapidly, which is worrisome for me.
I am still waiting on my genetic panel to come back. Again, the waiting game is just awful. At this point, I have no treatment plan - only speculation based off my own knowledge because of my educational background. This is the biggest pain in the ass on earth. Some of the things I thought would happen didn't - namely getting the PET scan to see if the cancer spread to other organs. All I REALLY know is that the cancer more than likely spread to my lymph nodes on the left side. I am not going to lie to you - it really hurts and I have breast pain that is now bilateral - which is scary. So I can honestly say I needed a treatment plan, like, yesterday.
So far I am doing my best trying to stay busy and positive. I love creating, so sewing has been a welcome outlet for me. I love doing it but again fatigue is fairly troublesome. I did have an incident yesterday where I passed out. The EMTs had to be called out and come to find out my blood sugar was low. The EMT was rude and just loud as hell. It was not a pleasant experience and all I wanted was for him to get out. Eventually he did, in that I didn't want to go to the hospital. Sometimes being loud and obnoxious is not the answer when trying to help someone - let me just point that out. When my own husband thinks you're being loud and obnoxious, more than likely you are. This is not the first time I had an EMT that was rude and down right abusive - at one point one EMT all most dislocated my shoulder, and he did tear my subscapularis muscle and created a small tear in the bursa of my shoulder. AND NO I was not acting like a crazy person, trust me (I lost function of my legs). Three guys in an EMT truck that wouldn't allow my husband to sit in the back with me - RED FLAGS everywhere. This was years ago, but it left a deep impression in my mind ever since. Leaving here is imperative for me at this point.
I am so grateful to all of you for reaching out. It means so much to me that many of you are thinking of us. Jim and I hopefully will be hitting to road around June 12-16. The genetic panel for me SHOULD be back June 6th, but Vegas is extremely unpredictable so I am keeping my fingers crossed on that one. Thank you all of you who donated to GoFund me or purchased an item on ETSY to support our cancer fight. I know I am in for a long road ahead, but so many of you have offered your time that it solidified the fact that I won't have to do anything alone. You have no idea how much that means to me.
Still working on a syllabus and some direction for me CEU massage therapy class offering. I also wanted to set something up for teaching kinesiology and anatomy to individuals going through yoga teacher training. I may not be there in person, but I know I can set up a format that yoga instructors can use to teach proper clinical kinesiology within a proper time frame. In my case, goals are important and staying busy keeps my mind off of all the other stressors that I have to deal with (moving, doctor's appointments, packing, and so on).
Anyhow, those of you keeping track of my blog posts I appreciate it so much. It is my own personal journey and I feel like you are walking this journey along side me. Cancer is one of those journeys in life that you do not want to walk alone. All of you make me smile, laugh, love, and most of all, give me hope.
I love you and you are loved.
Well, I received my MRI results and I have to say it was NOT what I wanted to see. I guess I can say in short that my cancer is growing rapidly, and my lymph nodes may have been affected. I guess the bottom line is, the cancer looks like is has spread to my lymph nodes. At the rate of replication of my cancer, by the time I get to North Carolina I will more than likely be at stage 2 cancer. I am still at stage 1, but it doesn't look like it will stay that way for much longer. I am still waiting for my genetic panel to come back to see if I have the BRCA 1 or 2 genes.
I met with my PCM and pain management specialist yesterday. He is an excellent PA who went to Emory and I have a lot of respect for this man. His suggestion was for me to leave for North Carolina immediately. So - instead of coming in July, it looks like we are pushing that date up to the first few weeks of June. We are going to wait to get my genetic panel back from Dr. Tarhar, and then we will be leaving this place for better options. I have to give a shout out here to Kristen Scott for going out of her way to research oncologists and breast surgeons at UNC that are currently taking patients! We are calling today to try to make our appointment for next month. SO far, I have most of my films on hand and I am just waiting on one set - the mammography ones. That imaging center was probably the rudest and most disorganized. The woman who did my mammo was so incredibly rude to me - like I was wasting her time because I was too young to have cancer. Well lady, cancer doesn't seem to discriminate based off age.
I also wanted to stress something in this post. I can't tell you how important it is to have an ACCURATE family medical history. I never really imagined myself getting cancer - I was thinking more autoimmune because my father has an autoimmune disease (although controlled now). Your family history is really important when it comes to cancer screening. I do not follow the epidemiological profile for someone to have aggressive breast cancer - so the only answer is that genetics played a large role in me actually getting cancer at age 31. I don't smoke, I don't drink, I workout consistently (even when sick), and I try to eat the best I can even though I do cheat sometimes (okay a lot of times). So my family history is really important for me. I am about to air a bit of my own familial dirty laundry (sorta) but I have no idea what my paternal grandfather carries genetically. I never met the man, and I have no idea what his family history entails. So paternal grandfather is a big old blank for me. When there are holes and gaps in the familial line based on what you know, it can add difficulty in finding which genetic side may have contributed or if this is just a freak diagnosis that just happened. I tend to believe in the science and not chance - I do believe that genetics played the largest role and the way I am thinking at this point is that I will test positive for BRCA 1 or BRCA 2 or both.
I wanted to say to all of you THANK YOU for the outpouring of love and support. Many of you have reached out to me via e-mail, phone calls, DMs, facebook, ect, and have offered all kinds of help for me and my family. I never imagined so many people would help us the way that all of you have. Many of you donated your hard earned money to us so we could make our way to NC without too much financial hardship, and also to help pay for an medical residuals we may incur during this process. Those of you I know personally who donated I tried to send you a thank you card just to express how grateful I am. Each and every donation I tried to write something back to let you know that I see you and appreciate you. Many of you have offered help in the realm of services and I am so thankful that we will be able to navigate our way through the UNC system (even though we have been there before). Many of you offered to come out and be by my side when I go through chemo, radiation, or both. You have no idea what that means to me. A lot of you are more like my family than just my friends.
I plan on crafting some items (because I LOVE to craft when I am stressed out) and sell them on this site, which will be another way that you can help donate. I love to sew so I will be making some hand sewn items including apothecary. If you want to donate that way, and get a little something handmade by me out of it, that is awesome too! I do have an ETSY shop, but I sell mostly massage holsters for other massage therapists in fun prints, because lets face it, the black ones just get boring. Plus mine are machine washable.
I am working on trying to get my CEU accreditation through the national board of massage therapists. I have taught CEUs before, but I have to develop a syllabus and other materials in order to offer 12 CEUs to those that need them. One thing I will say that is important in regard to a cancer fight is keep your mind as BUSY as possible. When you stew on a situation by not keeping busy compounds your situation and makes it worse. I hate this saying but you know the saying: "idle hands are the devils workshop" UGH (I hate that) - in this case there is some truth to that statement. I need to keep my mind as sharp as possible, and I hope to offer two platforms for my CEU course - online and in person. Developing this class keeps my mind busy, crafting keeps my hands busy. You don't want too much time in the day to think about your own prognosis.
This situation has been a huge stressor for me and my family. The key is trying not to let this tear you and your family apart, which in my case so far it hasn't gotten too crazy yet. I always wait for the other shoe to drop - and in the past week ALL my shoes fell off the roof. Luckily I still workout and do my best to stay positive - and even though people make me beyond angry sometimes, something I have realized is that life is too short to dwell on the things that piss you off to no end. Holding grudges and all that crap is just toxic - so - I just let it go (or at least I try to). Sometimes there are people you want to bitch slap, but we know that isn't helpful, although WE ALL KNOW it makes us feel better. :o)
Yesterday was a rough day all around, but today is a new day that I am alive and kicking. That is really all I can ask for right now. My hands are still working, and the medication my PCM Rx. me I am FINALLY ABLE TO EAT something other than oatmeal! Hurray for small victories. The little things sometimes mean the most.
I hope all of you have a safe and happy Memorial Day (I haven't forgotten). Remember those who we have lost WAY too soon in life and those who still serve today. Those of you doing the memorial Workout MURPH, please stay safe and hydrated. Make sure you distribute the weight of your body armor evenly around the body so your foot strikes the ground with even force. Yes, I studied body armor and its effect on the body when I took biomechanics in college. I got on A on that research paper. Push yourself, work hard, eat hearty, and share memories.
Remember...I love you and I am thankful for you.
One thing I have to say - is that I was not prepared for the INSOMNIA that would plague me all most every single night since I was diagnosed with cancer. Yes I do take naps, but honestly I would like a good 9 hours of sleep at night. Tonight, I think I fit in a good 3 hours. I have a doctor's appointment to attend all the way in freaking Henderson today, and I planned on being productive in getting all my image studies in order for North Carolina, but I don't see the part where I get all my imaging studies actually happening today. I guess I do have time - so I can call all the offices today and pick up all imaging studies on Monday. This may be what I have to do so I can at least get a nap in at some point during the day today since I will be spending 2 hours in the car to get to and from my actual appointment.
I guess since I am running on fumes here I can be completely candid in this particular post. I am scared shitless. The waiting game is just - well - horrific. Honestly, most breast cancer patients end up waiting quite a bit trying to coordinate chemotherapy, surgeries, and other important health matters like pain management, and so on. Trying to find your team of doctors is also a chore as well. I mean there is my actual Breast Doctor and surgeon, the oncologist, your PCM, your pain management specialist, your therapist, and the list goes ON AND ON. Each person needs their own copy of your medical records, which Vegas is notoriously bad about getting those studies to the correct physicians. Honestly, they rely on the patient to get all imaging studies as well as interpretations of those studies. Usually I stay extremely organized by having my own personal records and making several copies of them to send out to various specialists that need them so I am not playing the damn waiting game with all these imaging specialists and pathologists. It gets mighty frustrating, especially since I am so tired that I am not going to have the most productive day I was hoping for.
I do my best to stay as positive as possible, but when I am the most vulnerable is when I am working out. Yes, you read that correctly. I haven't cried much since the diagnosis, but the times I have are mostly in the middle of my workouts. I am extremely tired, so I am not going to go over the hormonal response that tends to happen when we exercise (maybe after a nap?) but what I can tell you is, when I exercise I allow myself to be unrestricted because I am working as hard as I possibly can when I am exercising. Another reason - I can hide it much better when I'm working out.
A lot has crossed my mind recently, and even though I have been TRYING to live as if nothing is changing, EVERYTHING is changing. My plans may have to be put on hold in regard to my MLS program that I worked extremely hard to get in to - the teaching position I was given at the community college is up in the air depending on how I handle treatment - I mean, everything that was going RIGHT went completely sideways when I was diagnosed with breast cancer. I am not saying my life is over, but it seems like time just STOPS completely and you hit the pause button on life. This is incredibly difficult to deal with in that I tend to plan as far in advanced as possible. Right now, I can only plan what I can see in front of my face. Like, when I was a muay thai fighter, usually I could see the punch or kick coming based off the individual's micro-movements and eye contact. Right now, I feel like I can't see any of those movements and I only notice it when I have been hit and kicked in the face several times over. My spirit isn't broken, but everything I know about myself is really being put to the test, and in many ways, I feel like I am completely failing.
I spoke about death in my last post, and I tried to be as lighthearted as possible about that subject, but now I am going to get real with you. No, I am not afraid of dying. What I AM AFRAID OF is dying with regrets. There were things I wanted to do in my life that I have yet to have done. Getting into the MLS program was pivotal in one of my life long dreams to travel for 6 months with Doctor's Without Borders. I wanted to travel to Thailand and Cambodia to help women that were victims of human and sex trafficking. The thought of dying before doing this really does hurt me on so many levels. I have already traveled a lot of the world, but I wanted to give back to the world so badly that it makes my heart ache. Secondly, I was really focused on my career for the longest time that I never stopped to have children with the one person I love most on this earth, my husband. What scares me the most is that I may have lost that window to have a child of my own. There is a possibility I may lose my ovaries, uterus - everything. If the BRCA genes 1 and 2 come back positive, I may have lost my window to have a child - to actually carry a child. I never thought about really having children - until the possibility of not having the option has come to the table. Honestly, what hurts me more than anything is leaving my soulmate behind in this life. Jim has been my partner in life for over 11 years. The thought of losing him to deployments was so painful that I hated to face it. Now the roles are reversed, you never really realize how much you love someone until the possibility of dying way before your time hits you in the damn face. Even though in my heart I know I can beat cancer, it doesn't stop you from thinking about your own mortality - especially when your doctor tells you people have died from the type cancer you have. I don't want to leave the one person I love more than anyone behind and alone. If you wanted to know what really runs through the back of my mind? This is it. It's leaving my husband Jim, my sister Ashley, my mother, my father, my brother Kevin, my stepmother, and my stepfather behind. Leaving my family and friends behind. This is what truly hurts me on the inside.
I am not afraid of treatment, but I know this road will not be an easy one. Chemotherapy and surgeries - I honestly have no idea what this will do to my body. If I had to make a choice I'd rather lose body parts than my life. I know that my husband will love me no matter what I look like, and I know my family and true friends will stay by my side no matter how sick I look or how deformed my chest may seem if I have to undergo a mastectomy. I know these things to be true, but the future really is unknown to me and at this point in the game, I have no idea what to expect either.
I know some of you were wondering what was truly in my heart and mind. As positive as I try to remain, you have those silent moments when these thoughts creep into your mind. The fear, the sadness, the anger, the unknown - all of this enters your mind, and there really isn't anything you can do to stop that.
I just want to say to my friends and family - that I love you. I feel like sometimes we never say it enough as corny as that sounds, but I do love you. I am not religious by any means of the imagination, but what I can say is that I am thankful that those of you who entered my life changed it for the best. You have given me the best memories, the best advice, the purest love, and unending acceptance.
....I love you....
Okay, by D word I mean death. Even though this is something that none of us wants to EVER talk about, it is something that I need to talk about, and face the possibility that things can go wrong on this path called cancer. I am going to be as lighthearted about this as possible just because even for me this subject is tricky and scary.
First off, when I was diagnosed with cancer, one of the first things I thought was I have no will nor do I have a living will. In college I was forced to take physical activity and aging, and I actually studied this in-depth when it comes to elderly patients. I never thought I would use any of that particular information, so at the time, I didn't really give two shits. Funny how life works that way, am I right?
First, I am going to talk about living wills. All of you, young or old should have one. Anyone remember Terry Schiavo and how her case ended up being everyone's business? She had no living will, so her husband had to make the decision as to whether or not she should be taken off the feeding tube. Her mother and father wanted her to stay on the feeding tube to keep her alive, and filed several injunctions through the court to stop her husband from pulling the tube. In the end, her husband did pull the feeding tube out, and she ultimately died. This sparked a national interest in making sure your wishes are granted LEGALLY versus what she may or may not have told her husband. I am not going to go into details about my own opinion on this case, but it does bring up an important fact: just because you told your spouse what you wanted, doesn't mean the rest of your family will believe that said person. So, to protect my husband and myself, a living will is necessary for me now. So what exactly is a living will? In the case that I become unable to make decisions for myself, say, I am on a ventilator, a living will ensures that my wishes are followed through. So an example of this is that I am on a ventilator that is breathing for me, I may say well I don't want to stay like that forever, after 2 months please pull the plug and allow me to die in peace. Your living will ensures that no one in your family will fight about what THEY believe you want. Grief can do strange things - even though I know family members don't mean to do this, it is human nature to think more about yourself rather than the person suffering. I am not saying that "yeah you're family is selfish." What I AM saying is that they may not be thinking about what YOU want, but more of what THEY want - which is for you to stay alive. The hardest thing anyone has to do is let someone they love go and usually that is the last response for most. So for me, a living will is a necessary, especially now that I have cancer. I will be undergoing a lot of treatment and surgery, and I want to make sure that my wishes are met and that my family comes together rather than rip each other apart. The living will can also be considered as an Advanced Directive. A living will can be as detailed as you want it to be. You can say what standard of care you want, where you want to be, what hospital, how you want to be treated, I mean the list GOES ON. The best advice for anyone else facing a similar issue or if you yourself want a living will, think about EVERYTHING that goes into the healthcare system and how you want to be treated if the worst happens to you.
Now on to the WILL. Ugh, yes I said WILL. A will is tough because really at 31 years of age, it isn't like I have a big ass nest egg that I have to think about divvying up or a shitload of assets that I need to figure out what goes where. Now if you are over 60, YES your will is beyond important. The one thing a will does for me is it forces me to face my own mortality. It forces me to think, yes I can die from breast cancer, which is something that is hard to deal with when I am supposed to be at the peak of my life - thinking about having children (eventually). Due to cancer, this is something I can't exactly avoid at this point. Most of my actual WILL will entail how I would like to be treated after death - like whether I will be cremated (yes this is the route I will be taking just FYI) or buried. I will also have exact instructions on what to do with my ashes if the inevitable happens. Having a will is important because I have seen families fight over the smallest details in the event a loved one dies. As I stated above, we don't always think about what the deceased wants, it's human nature the think of what WE want - the living. What will make the LIVING feel better - not what the deceased really wanted after death.
This post is rather depressing, I know. I try to be as lighthearted as possible, but having cancer forces you to think about things that you never thought you would have to deal with until you turned 60 years old. I am 31 and I have to think things out and have everything legally binding to ensure my wishes are followed through on.
As far as my health is concerned - well - lets just say I still exercise as much as I can. I do have a lot of fatigue issues that I have to deal with. I usually take naps in the middle of the day so I can rest because sleeping at night is a struggle (and no this is NOT because I am taking naps, lol). Food is a tough one. My stomach cramps are beyond painful after eating, and the only food I can actually eat without getting sick is oatmeal. Crazy right? I have never been a huge oatmeal fan, but I am eating it all most 3x a day. I will be meeting with a Registered Dietician at UNLV in order to figure out the best meal plan to fit my needs as a cancer patient. I have breast pain on occasion and discomfort in the lymph area on the left side.
I had my MRI performed today with contrast, and lets just say it was EXTREMELY uncomfortable. Apparently, a man developed the prop used in MRI's to scan breast tissue and that thing is the most uncomfortable piece of garbage I have ever had to lie in. It is hard as a rock on the sternum and it looks absolutely ridiculous. I can tell you right now comfort was NOT the main focus when this thing was developed. They are also crazy expensive - up to $5,000 for an uncomfortable boob hanger. Anyhow, the MRI results should be in tomorrow and I will have a better idea to see if my cancer has spread to any other organs and areas of the body. The biggest focus being the lymph ducts and lungs. When breast cancer metastasizes it usually spreads to the lungs and lymph nodes as those are the nearby structures of the actual cancer itself. The MRI with contrast also shows the blood supply to the cancer. Remember high school biology and those things called capillaries? Well those capillaries are an exchange center for nutrients in the blood, so the capillaries are what feeds the cancer with nutrients for growth and replication.
I am posting a bit early just because tomorrow is SUPER BUSY (May 26). I have doctor's appointments all over the place and I have to pick up my imaging from several locations around Vegas, so I won't be posting anything tomorrow. Things are still slightly slow, now that the MRI is completed, I have to wait on my genetic test to see what my treatment plan will entail.
Okay guys, hug your family members, live for tomorrow, fight for today. Do what you love and fuck the consequences because Life is WAY too short for regrets. Much love and thank you all of reading my journey and thinking of me during a very difficult time in my life.
PS - a GO FUND me page may be added just because my treatment will more than likely take place in North Carolina. Vegas isn't the best place fore cancer treatment or treatment PERIOD. Example: a woman was pregnant here and she went into labor. Her normal OB/GYN was out of town as she was early and the on-call OB/GYN came in. It was caught on video him bragging about how many tequila shots he had at the Luxor casino, and the nurses laughed at this. He delivered a baby drunk and yes the baby did have complications after birth. Come to find out, this man had ALL KINDS of issues regarding his behavior with alcohol and had a shitload of malpractice suits against him. So - the decision for treatment here was sort of out of the question.
Have a great night guys.
UPDATE: we did set up a GoFund Me Account. To donate, Click BELOW:
As I told most of you who may have read my blog, well, I did indeed pick up my pathology results. Reading them was different for me since my specialization is NOT cancer - rather Kinesiology and Anatomy. So, I had to rummage through old textbooks and online forums to figure out what I was dealing with. SO HERE IS THE RUN DOWN FOLKS.
My cancer is positive for estrogen and progesterone. This means that my cancer is basically fueled by these two hormones. Yes, the natural hormones we make can bitch slap you in the face when it comes to cancer. For me, the progesterone factor was stronger than the estrogen, but either way they are both positive. So hormone therapy may be an option for me as far as treatments are concerned. Roughly 65% of females have positive markers for both hormones.
Proliferation Rates - wondering what that is? Basically, it is the rate at which your cancer is replicating or growing. For most, you want this to be low, around 10%. Anything over 20% is considered high. WELL - in my case I am sitting at Ki67 staining percentage at 50%. This is not a good sign, it basically means the tumor cells are dividing at a very fast rate. I knew this damn thing was growing bigger and more annoying.
The type of cancer I have is called Invasive Ductal Carcinoma which is the most common among females. For me, my cancer has apocrine features. What the hell is this you ask? WELL - you know your sweat glands? Well Apocrine comes from the same name so my breast cancer has those types of features (weird right?) It is rare to have this sub-type of cancer from what I understand, but it is important to know what your cancer looks like under a microscope. When you read your own pathology results (which hopefully YOU NEVER HAVE TO DO THIS) you will see a section on how your cancer features under a microscope.
Next is the Nottingham histologic grade. I am not going to go into details on this because there are SEVERAL factors that go into this number. There are 3 total grades: Grade 1 has a score of 3-5, Grade 2 has a score of 6-7, and Grade 3 has a score of 8-9, This grade system shows the cancer's aggressive potential in your body. Unfortunately for me, my score was an 8/9. So I am at grade 3. My cancer is aggressive - like me.
Now for some good news! Luckily they did catch my cancer in enough time that it has not reached 2 cm yet. What this means is I am at Stage 1 cancer. This is great news in that the survivability rate at stage one is very high. Even with all the bad news sort of rolled up - this was the one thing I was thankful to find as a ray of light - oddly.
In summary, yes I have an aggressive form of cancer that has a high chance of metastasizing, but the good news is, it is in stage 1 so my hope is that I respond well to chemotherapy and the antibody herceptin - which has been proven to block the HER2 receptors that cause replication of cancer cells. The combination of chemo, herceptin, and surgery have been highly successful in breast cancer patients - So let us hope this works for me as well. The waiting game is really the roughest part of ALL OF THIS BULLSHIT. Seriously, things do not move quickly when you have cancer - from the support groups I have encountered it can be a shit load of waiting.
My MRI is schedule for May 25th. This will give the doctors an idea of my cancer and if it spread. One thing I will say is I am having a hard time eating food. My stomach has been so messed up that eating is a constant battle. The cramps in my upper belly have been just, ugh, I have no words to actually describe the kind of discomfort I have been feeling. PLUS I have been having breast pain and pain in the lymphatic duct in my left armpit (lovely right?)
My hope is that those of you reading this will learn a little something about how this process all works. It isn't easy by any means of the imagination. It is a lot of research and powering through some of the bullshit you may encounter with doctors that have zero empathy for your situation. I am not saying all physicians are this way (maybe just about 90% in Vegas are), but you may have to really make your point in order to be heard. Don't allow them to shut you up. I guess a part of me is writing this blog to allow others to understand their situation if they are in a similar spot, and how to fight when some doctor's believe you are WAY to young to have cancer and you are just a hypochondriac or drug-seeker when these things DO NOT DEFINE YOU.
Please remember, if you ever feel an abnormality - DO NOT LEAVE IT. Force a damn doctor to listen to you and what you have to say. If they don't - find another physician that will. This is YOUR LIFE we are talking about. You are important and don't let ANYONE allow you to feel otherwise.
For me - it's 2 weeks of waiting - so more than likely the husband and I are going to road trip for a little bit to get my mind off all of this. I mean, i should probably say that the word "cancer" is constantly sticking to the back of your head, but visiting friends and family can help ease some of the worry. Let's just hope I can hold down food during the process, right?
UNTIL next time - thanks for reading. I wish you all nothing but happiness and love. If you are going through some shit, remember someone else is going through something worse. This is what I try to tell myself - some people have it way worse than I do.
Well I guess I should first state the rules my blog. First, no nasty comments or I will block you - FOREVER. Telling me to die and kill myself is, well, counterproductive since dying is a possibility for me so your wish may be granted - but F**K those of you who have nothing better to do than to put someone down. I guess that is probably my only rule to all this. This blog is really created for my own sanity and to chronicle my experience till the end of this thing.
As of May 23, 2017 at approximately 2:00 PM I was diagnosed with Breast cancer at the ripe old age of 31. My cancer is HER2 Positive (which I will go into in a second just read my feelings first lol). My actual feelings are really ALL OVER THE PLACE. There is a sense of sadness that yes this can kill me and I am not 100% sure how early they caught it since yesterday I was too hysterical to ask the RIGHT questions. I normally pride myself in being composed and knowing what questions to ask to make the best decision for me, but that didn't exactly happen when Dr. Tarhar blurted out "you have cancer." Honestly, at my age nothing really prepares you for that sort of statement. My response went exactly like this: Blank face, eyes wide, what the fuck, hysterical crying, and my Asian side telling me to suck it up buttercup! The one question I mustered up to ask was what was the mortality rate of the cancer I had? Well, she told me people have died from the type of cancer I was diagnosed with. That was about all I had her spit out - SPEAKING OF SPIT...
Yes I had to spit in a vile so they could do a genetic panel on me. More than likely to be tested for the BRCA gene and to see if the cancer is metastatic. If I test positive for the BRCA gene more than likely I will have both breast removed and possibly hysterectomy. For those who don't exactly know (thats okay) there are two mutations, BRCA 1 and BRCA 2. if you carry these mutations your chance of cancer of the breast, ovarian, and cervical go up exponentially. The best example I can give you is Angelina Jolie (even though it pains me to use this example). She tested positive for the BRCA 1 gene so she made the decision to undergo a double mastectomy to prevent future breast cancer - and had implants put in so no one even notices. There are several schools of though on this - some physicians believe even IF you test positive for BRCA but have no breast cancer, really all you need to do is monitor your health - meaning mammogram and ultrasound screenings yearly no matter the age. Some people opt for more invasive measures as Ms. Jolie did since her mother died of breast cancer. My case is slightly different. There was no need to be tested until now because my biopsy yielded a positive breast cancer result. This means that for me, if I do carry the BRCA gene, it "activated" per say (not really the right word but I am going with it). This is all most like a means of damage control - see what the genetics yield to make a positive assessment of what my treatment should look like. As far as genetics - WE HAVE COME A LONG WAY BABY. The only part of this that really irks me is that it takes 2 weeks to get the results, which is actually a pretty fast turn around time considering most genetic tests take up to 30 days. BUT, I've actually ran paternity tests before and it really didn't take that long.
NOW - what the hell is HER2? The HER2 is a protein that promotes growth of tissues on the outside breast tissue cells. When you are HER2 positive, it means that the cancer tends to me more aggressive and replicates at a faster rate than someone who is HER2 negative. This is more common in younger women diagnosed with breast cancer than those who are over 60. Being HER2 positive also means that the chances of the cancer metastasizing goes up exponentially. So for me, time is of the essence at the moment. Since I was a dumb ass yesterday and didn't get my pathology report (I plan to pick that up today guys) I don't know exactly what test they used, BUT in most cases when you have your biopsy they run what is called an IHC or immunohistochemical stain. When several HER2 markers are present the tissue will change color, which then it is examined under a microscope. Usually, they will not tell you that you are HER2 positive unless there was a high number of copies to begin with to avoid a false positive of the HER2 (especially with my own doctor and pathologist). SO, yes I am positive for HER2, and because of this I will have to undergo chemotherapy (more than likely). Sometimes when breast cancer is caught early, surgeons can perform a lumpectomy and bam you are okay, but this is not the case for me. The chance of recurrence of cancer goes up when you are HER2 positive - so I myself and leaning towards removing my left breast to prevent cancer from occurring again and increase my chances for remission (for over 10 years).
Ladies, PLEASE PLEASE DO SELF BREAST EXAMS! I actually found my breast lump in the shower (don't be thinking nasty thoughts guys! lol). I was just washing like normal and I said what the hell is this on my boob?!? Every doctor thought I was a hypochondriac or drug-seeking, but I did find a female physician that took me very seriously. Vegas is NOTORIOUS for horrid physicians and bad practices in general (which is why I am hoping to move my treatment to North Carolina) but if you feel something is WRONG find a doctor who will listen to you. Had I stopped looking for the right doctor, my chances of survival could have been literally zero. Thank you Dr. F. Carullo for taking a conservative approach to my cancer. Too bad she isn't a primary care physician.
I do not plan on getting implants if my breast have to be removed. There is a reason for this. Our scars show us where we have been and what we have experienced. I don't want to cover my battle scars with implants. They help me remember that life is short and things can happen unexpectedly - both good and bad. I do plan to tattoo over it though - and those who know me know I am tattooed everywhere and don't have a whole lot of skin left to tattoo, lol. Maybe my mind will change, but as of right now, I have no plans for that. FYI I have NOTHING against women who choose to have implants put in after their mastectomy. This is a PERSONAL choice and we have NO RIGHT to judge anyone's decision on their body and what they choose to do with it. I wish more people would get on that bandwagon - okay okay no politics here. :o)
As far as work, well, I quit my job obviously (plus the owner of my last job was CRAZY). My purpose right now is fighting what is in front of me - which is breast cancer. I never thought I would be in the small percentage of women to get cancer in their 30's - and every doctor told me my chances of actually having cancer were roughly 2-5%. WELL I fall into that small category I guess. This is the worst club to be a part of I can tell you that much, but with so many advances in medicine, a therapist, and the support all of you are giving me, I can beat this thing and come out on top.
Long first post - I am going to workout and hopefully get something done today, right? :o)
Much love and more to come -