OH man, I am tired. Well, I finally have a desk. I ran over and got a desk and put it together in about 20 minutes. It is pretty basic, but works for what I need. Typing on the ground was making my back hurt! Luckily, I still can still put shit together relatively quickly even though I am constantly tired. Yes, many ladies put EVERYTHING in their own homes together (many strong military spouse ladies I know around here are the shit).
I said I would write a blog post about my Advanced Directive, Power of Attorney, and End of Life Will. At the age of 31 this isn't usually something you think about, especially a WILL. I mean, honestly, most of us have not amassed that much wealth to distribute properly among family members. Since Jim and I have moved so much, I have been extremely reluctant to buy a house because I wanted the house I bought to be lived in for at least 10 years in order to build equity - BUT enough about that. In my case, because cancer is so unpredictable, I had to have all of these things set in place in order to protect my own interests, my husband, and my sister. I wrote a blog post about this before, but actually DOING IT was much tougher than I anticipated. I know they try to make it as harmless as possible, but yikes. I am not going to lie to any of you - I cried while putting all of it together. The reason is, at 31 - you don't truly think about your own mortality unless you have a job that forces you to. Yes, there are hazardous jobs in the world that you HAVE to have these things put in place, but for the average person, this isn't really the norm of things. Having cancer made me think about things that I didn't want to really think about. I had to think about the worst case scenario in every situation - what if something catastrophic happens during surgery? What if the cancer spreads all over and my life is severed? Ugh, just all of it is hard to think about and hard to process. I am happy that I was alone to do this - I don't think I could have done this with my husband or family around. These decisions are deeply personal, and I just couldn't do any of it near anyone. I also wrote letters to those closest to me to accompany my will. Sometimes, you just have to say things that you just don't want to say while you're alive. Am I thinking I am going to die? No, I',m not, but I have NEVER been in a situation where I had to think about end of life. I wanted to make sure everything was set in stone and that those I love know that I Love them.
For others in a similar situation, it is best that you cover your ass and the ass of those you love. I have seen A LOT of fighting within families because something unexpected happened and no one knew or EVERYONE thought they knew exactly what the individual wanted. When you don't legally bind your wishes, it can turn into a free-for-all with family and friends. This was my way of protecting everyone and letting everyone know that these wishes were MY OWN and no one else. Sometimes you may think you know someone, but what they actually want is completely different from your own thoughts.
For the people that will make the toughest decisions for me, it makes things easier for them because they know exactly what I want in each situation. Only two people are allowed to make decisions on my behalf, and I made that clear within my legal documents. If you are in a similar space, this should be within your legal papers as well. You want those you trust and know will do what you ask to make the hardest decisions for you.
Just some insight from someone who is in that space.
Much love to all of you,
Well, most of you already know this, but I finally planted back to North Carolina. Luckily, things have gone fairly smooth considering everything we did was long distance from Las Vegas, including the house we decided to rent. I am so fortunate because I actually LOVE our home and our landlord and his girlfriend are super nice. Normally when you deal with a property management company it can be the BIGGEST pain in the ass.
I miss my family. They will be here next week. I finally have internet in the house, even though I have zero furniture besides what my landlord left for me, which was SUPER nice of him. I honestly forgot about how good people can be to you when you are just openly nice to them. In Vegas, I felt like I had to be a gigantic asshole all the damn time because NOTHING would ever get accomplished unless you were. That gets really exhausting, so what can I say, I am already happier just being here because I can just be me. Our home is so quite, it feels a bit strange! I am so used to loud noises ALL THE TIME and now I am kind of in the middle of no where and it is super peaceful. I honestly forgot about all of this, and I am surprised by how much I actually missed it.
As far as my health, well, what can I say? It seems to be failing me. Honestly, my mind is sharp (thank goodness) but my body just doesn't feel like it's mine. My energy levels took a sharp turn a few weeks ago, but it has just gotten a lot worse as time goes by. I work out 4 days a week (not my usual 5-6 days) and let me tell ya, those days are struggles! It takes EVERYTHING I have inside me to make those workouts, well, work. I am so slow, which is weird for my body. I feel like everything is moving in slow motion in regard to my body, and I do get embarrassed because I am used to people asking me how can I do this or that? Or, I want to lift like that! That part is gone with the wind I guess. I took everything I had to power clean and front squat my normal warm up weight (roughly 115#). I am sharing this with all of you, even though it is INCREDIBLY difficult for me to share because, well, I am embarrassed! I am a little bigger now, but I've lost roughly 10# in about 2 weeks time. I am dropping weight a bit faster than what is healthy. Remember, you should only lose roughly 2.2# a week on the HIGH END of things. I can't eat a whole lot anymore. My appetite is about gone, and depending on what I do eat, I end up throwing up a lot of foods that just don't sit right. So - I am sort of subjected to oatmeal and protein shakes. Here is what I can say: I can still do strict pull ups, although not pretty. I can still clean and snatch, although not as heavy. I can still do a handstand (pretty well actually!). I can still run, jump, and swing. I can still do awkward movements like a Turkish Get up, even though I am not at my max weight (I did 55# today, max is roughly 75#). I can tell you this much, I am thankful for the things that I CAN pull off. I know many of you are wondering why I haven't made my way into a CrossFit gym. Honestly, it is because I can't do anything at warping speed anymore, and pushing me to do it can land me in the hospital (seriously). My body is fighting as hard as possible, and I have to move at a pace that I can survive with. So, I essentially program for myself and I go to local gyms around town. I do the very best I can, but it is incredibly hard. I know once I go in for surgery, I will lose just about everything and will be starting from scratch. Right now, my goal is to prepare my body for what it is about to face - invasive surgery and chemotherapy. As a cancer patient, my advice to others with sickness, I can't tell you how important it is to exercise and keep your body healthy. Yeah, things won't always feel right - but all you can do is push yourself until your body says STOP (and trust me you will know when your body says this). During my clean workout, the left portion of my upper body literally began to seize up. I couldn't breathe right and it was really painful - basically that was the signal that my body was finished.
I go in for surgery in two weeks time. Am I scared? Absolutely. If I wasn't I would be kind of concerned for myself lol. I know that what I am doing RIGHT NOW is putting my body in the best position to go undergo surgery. If anyone else is in the same boat with ANY surgery, keep your body health before hand. Your recovery will thank you for it. :o)
Anyhow, my NC friends, I would love to see you before I look like garbage! :o) Some of you have already reached out, and I am really thankful for that. Right now, I am just trying to get some things finished (will, advanced directive, power of attorney) before shit hits the fan, per say.
Much love to you guys, and of course, Happy 4th of July. Celebrate responsibly (or irresponsibly it's up to you. life is too short).
Some of you may have noticed, but I deactivated our GoFund me Campaign tonight. We received enough donations from those of you who donated your hard earned money to us to help us get to North Carolina for my doctor's appointments, paid for our room and food, our car rental, our dog boarding, and medical expenses we had for the past month. I can't thank you enough for all you have done for us, and I am forever thankful that many of you were willing to donate. We are now receiving help from Care Coalition to help with the extra expenses associated with moving and they have come through for us as well. I will be making my move to North Carolina on Wednesday (permanently) and Jim will follow about two weeks later with all our belongings. Jim will be arriving with me to NC but we will have to come back to Vegas to take care of packing and shipping my car. For those of you wondering, yes we did find a house and we should be moving in on July 1st. We are going to be living in Southern Pines again.
Many of you have been keeping track of my journey, and I haven't written in some time because the pain of having cancer has reared its ugly head. I am in pain much of the time now, especially in the evening. UNC Cancer Center has found more in my breast tissue versus what they found in Las Vegas, and it is actually worse than we thought. The cancer has spread into the Sentinal Node in my lymph ducts, possibly my back, and they found another mass in the right breast roughly 0.5 cm in size. My cancer has grown to 2 cm now, so I guess you can say I am really ready for this thing to come out of me, and chemotherapy to get rid of what has spread.
I am a bit tired tonight, so I will end it here. I am looking forward to North Carolina, and hopefully I can get a workout in tomorrow (this week has been ROUGH). I have been a quite a bit of pain so I think I need a good workout.
Thank you all for everything you have done to help us. I hope I can return the favor, and I am trying in some ways to do so.
Much love to all of you!
As strong as I am trying to be given the circumstances, it is getting incredibly difficult to stay the course of positivity. So far, everything that has occurred in NC has been okay. I met with the entire surgical staff and radiation oncologists, and a surgery date for my double mastectomy is set. I am extremely happy that all of those things in North Carolina worked out (I was sure it would), but everything in Vegas has turned out wrong in every area. I don't expect any real special treatment because I have cancer (other than my handicap placard), but one thing I do expect is respect and a since of dignity when someone speaks to me. It seems like every place turn, I have been treated like absolute garbage. I am not saying all people are bad, but I have been met with straight up nastiness the last month I have been here. Take for example, I am at Walmart - I have my cart and reusable bag trying to get to my car. I am in the pedestrian walkway so I have the right of way. Of course I still look both ways, and I see a car driving EXTREMELY fast in a parking lot. Of course I stop as I do not want to get hit by this crazy man. I wave my hand to signal to him to go. You know what he does? He honks his horn at me and says something along the lines of "hurry up and go you nigger." or something to that effect. The words I heard clear as day was hurry up and you nigger. I mean, seriously? This doesn't hurt my feeling per-say as I do not know this man, but I haven't heard such brazen racism in quite some time.
Stress has been a killer for me. Moving is tough, and we are moving on the fly to add to that. Luckily we found a good man that we are renting from and a really nice home for us to live in that is within our budget. I have been hospitalized twice due to cancer related complications. The first doctor straight up forgot about me, but thats okay. The second was a Nurse Practitioner and I really liked her. When it came time to fill my Rx, the first pharmacy we went to, I swear the pharmacy technician didn't listen to a word I said. I told him that I was a cancer patient and I had proof of this (yes I truly did) and he was still a straight up asshole. I told him that we were moving in a week and a half, for cancer treatment and he still acted like an asshole. I mean really? Is acting that way really beneficial for anyone? Also, why do they feel the need to be straight up mean to me when I try m very best to be as polite as possible. Sometimes it doesn't feel worth it.
Then my drama this morning when my own publishing company who REFUSED to e-mail me back for an entire month about my royalty payment. They had ample time to tell me that I was still in the red, but my contract (which I still have) is different from theirs. I had to go over their heads to even get them to RESPOND to me, and then the customer service individual straight up lied and said she sent me all of the information. Well, this girl (me) keeps receipts and I showed them proof that she had zero contact with me. So on top of all of that, they tell me I don't get any royalties because I owe them $4,000 from the advance - which my actual advance was only $2,000. So they will be taking money away from my royalties for the next 6 months, which is the next pay period for my book. I feel all most stolen from. That was really the straw that broke the camel's back for me. I did have a good cry and then I had to suck it up and remember I still have to fight cancer no matter what these people do to me. I guess I am just appalled at how easy it is for people to royally screw you.
I am doing the very best I can, but things are getting harder and harder for me to deal with. I love crafting as it keeps my hands busy and I don't think about the things that hurt me the most. I exercise 4 days a week - and even that has been its own struggle as I have lost strength in my back and arms. I get nose bleeds everyday, and I have pain all most everyday. Some days are asymptomatic, and those are the days I try to get the most done.
I am not going to lie to you - yes there are days that depression exists and the frustration becomes overwhelming. I won't lie about that. I know there are a few of you out there that will tell me to suck it up - but until you experience cancer and all of THIS it is easier said than done. I am doing the very best that I can given the situations I have been put in, but things are not easy, and I am truly ready to be back to North Carolina.
Writing in my blog helps me put things in perspective. one thing I can say is that many of you have supported me in so many ways and I am so thankful for you.
One thing I will tell you that I have learned from this entire experience. Be nice to each other. You have no idea what another individual is facing, and being rude and nasty to them could break them. A nice comment goes a LONG way, as I explained during my American Airlines flight. It wasn't the big things that made the difference - it was all the little things the staff did that made me happy and brought me joy and less stress in my life. Those are the things that really matter.
I just wanted to write a short blog post to keep you guys updated and share my feelings :o)
Much love to you all. I will be posting more items on ETSY today, so keep a look out!
You are loved, even if it may not always feel like it.
I am pretty exhausted from today's ordeal, and I writing from a hotel room with VERY slow internet service, so I am going to write what I can here. Jim and I are back from UNC Cancer center and we finally have a treatment plan! I feel more at ease now that we know what we are doing for my cancecr treatment. The UNC clinic is CRAZY efficient. We stayed one room and we saw Radiation oncologist, Surgery Oncologist, Plastic Surgeon, Geneticist, and Radiologist. CRAZY!! BUT amazing!
So the one piece of good news: I do not have to undergo radiation because of some of the choices we made (I will go into that). Radiation isn't really dangerous, but it is one step we can skip because of the treatment path we decided to go on.
Many of you are wondering so...we ARE going forward with a double (or bilateral) mastectomy. The reason we decided on a double (or bilateral) instead of simple (or unilateral) is because the Risk/Benefit ratio was higher on the risk side if I kept my right breast. I want to prolong my life without having to worry about my breasts trying to kill me again. This is a deeply personal decision and a difficult one as I am losing both my breasts, but Jim and I talked at length with the Surgical Oncologist and it was a decision she would have made if in my position. She did NOT say this until after Jim and I came to a decision. I am the one living with cancer, and many may not agree with my choice, but I want to prolong my life and this seemed like the most logical for both treatment AND prevention. Along with this, I did decide to go foward with reconstruction. The reason is more psychological than anything. Since I am going forward with a double mastectomy, I didn't want to wake up in complete shock after surgery being completely flat. Also I feel that this will be easier for me to deal with as far as healing and curbing what is known as phantom pain. I feel that having something there will make it easier for me to accept that I have no breasts. I also do not want to try to field questions about why my chest is flat or why I have no breasts. In case you're wondering, I decided to stay the same size. I really can't go any bigger because I am muscular, and since I am not keeping ANY breast tissue, it makes the procedure more complicated. My chest will be numb forever, but hey, if it saves my life I'm okay with it.
I will have to undergo chemotherapy. The surgery is first, so I may not have to have aggressive chemotherapy. This is a good thing as I hate being sick all the time. I will have to go in once every 2-3 weeks for treatment. I will have to undergo hormone treatment for 5-10 years after the completion of chemotherapy - basically I have to take hormone pills everyday. This does inhibit my ability to have children, but if I stop taking it I can still get pregnant. The doctor already told us we wouldn't be able to try anyways for 2 years. This works out for us anyhow since I had no intention of getting pregnant within that timeframe.
The radiologist performed another ultrasound (yes she performed it). She saw 2 abnormal lymph nodes under my left arm so they will be biopsied tomorrow. I am not exactly looking forward to getting yet another biopsy but it is important as this will see if they will remove all my lymph nodes, and confirm the MRI that the cancer may have spread into that area. If this is the case, they will remove all my lymph nodes on the left side, but from what I understand they planned on removing them anyways.
The surgery will take place first. They will perform this about a month from now. The doctor said there was no risk in waiting, so this gives Jim and I some time to move out of our home in Vegas and move to NC. It will be tight but we have the ability to do it. The reason why it takes a month is because the surgical oncologist and plastic surgeon have to coordinate their schedules since they do EVERYTHING in one surgery. My chest is apparently really muscular with NO real room up in my chest cavity so they are going to TRY to put in silicone implants, but if they can't they will put in chest expanders that I have to go in every few months to get filled. This is the downside to the reconstruction if you are relatively skinny or very muscular (the latter being my case).
So, this is the treatment plan. This may not be what you would do, but every person is different. I just ask that you please respect the decision that I made, as I am happy about my choices and feel like I gave myself the best chance for longevity of life. I appreciate all of you and how you have helped me during this time. We will keep you updated as time permits here in NC.
Much Love to all of you!
My husband has been working very diligently in regard to my cancer care, but he had to learn the hard way that not all charities are created equal. I, on the other hand, already knew this. I donate to 2 major charities, and that is the Special Operations Warrior Foundation and Care Coalition. The reason I donate to these charities is because I know where the money is going. Most of their funds go towards actual aid, with very little going towards salaries and basic overhead. Let me give you a quick rundown of some of the breast cancer charities and how difficult it can be to see where the money is actually going.
On the list of WORST charities you will find the Breast Cancer Relief Foundation. The CEO makes roughly $162,000 per year and the president makes roughly $103,000 per year. Not too shabby in regard to their salaries because let me tell you, I have seen WAY WORSE. Some CEOs of charities are making MILLIONS of dollars. In a 10 year span, they raised around 63.9 Million dollars, and paid out 44.8 million to solicitors. Solicitors essentially get the donations for the organization so these monies are normally going to employees of the actual charity itself or major companies that support the charity (makes zero sense on that one right?) and those who host fundraisers. Now, how much did the Breast Cancer Relief Foundation actually pay to those like me? Well, in 10 years, 1.4 million went to direct aid which may seem like a lot, but it actually only equates to 2.2% of total revenue given to the organization itself. So, with this charity, for every dollar you donate, 98% is going towards overhead, companies, salaries, and fundraisers, while only 2% is going towards those who need it. In my opinion this is not a good ratio for your hard earned dollars.
The next Breast Cancer charity on the worst list is the Woman to Woman Breast Cancer Foundation. This is a smaller foundation so the money amount will be smaller, but the distribution is worse than the aforementioned charity above. This charity is a husband and wife team. So the CFO made roughly $39,000 in 2014 and his wife, the CEO made roughly $38,000 in 2014. In a 10 year span, they netted roughly 19.4 million dollars and 18,2 million was paid to solicitors. in the 10 years they filed tax returns, only $58,708 went towards direct aid - which works out to be 0.3% of all revenue going towards someone like myself or screenings for those that are less fortunate. The fact that this charity only gave 0.3% to patients is what is unfortunate about this case, and even worse that the CEO is a breast cancer survivor herself.
Now - let us just use a general cancer foundation. We will take a look at the Cancer Fund of America. The CEO salary in 2011 was $236,815 and the CFO salary in 2011 was $121,152. In a 10 year span, they generated 86,6 million dollars in donations. They gave 74.4 Million to solicitors, and a measly $853,491 went to direct aid to cancer patients within a 10 year span. That equates to 1.0% of total monies made going towards people that actually have cancer.
These are just examples of how charities don't always put the money you donate where it belongs - to the people who truly need it. My advice for all of you who donate to charities is to understand and know where your money is going. Yes donate to charities - but makes sure that a reasonable percentage is going towards those you are trying to help.
This is the main reason why I want you all to know where your money is going that you donate to our crowdfunding campaign through GoFund Me. I want you to know that your money isn't going towards luxuries in life - it is going towards SAVING MY LIFE. We have reached out to breast cancer organizations that are supposed to help women and their families get to locations so that the cancer patient has a good support system with them, but I already knew this was a very lost cause. Beware of anything that says "awareness" because normally that means that the money donated goes towards giving hospitals pamphlets on certain issues rather than actually fighting it. The awareness part is all most what is the most troubling, because you have no idea how many doctors I had to go through to get a straight answer about my cancer. Many thought I was way too young to have breast cancer, and they are right. I don't fit the epidemiological profile for a breast cancer patient, but the fact of the matter is - cancer does not discriminate based on your age, sex, skin color, ect. Sometimes cancer just happens, and in my case more than likely it is genetic.
Don't even get me started on how difficult it has been to get my genetic profile back and I am STILL WAITING to receive them because my doctor likes to hoard information, which is awful for a cancer patient. For some strange reason they want to wait until the 13th of June to go over my MRI, which I already have, and my genetic profile - and I finally had to tell them that I was going to be seen at UNC and they still do not want to give up my genetic test. It is my genetics - not DR. Tarhar, not the hospital, they are mine and I have rights to them. The fact that this physician is flat out refusing to release them to me so I can take them to UNC is a bit appalling. Every doctor I have spoken to outside of Dr. Tarhar's office has asked me where I am going to for treatment - and when I say UNC they all tell me good, do not stay in Vegas for your care.
If you are curious about the top worst charities there is a link below which you can look up specific information. Digging up some information can actually be quite difficult. This is probably the best compilation I have seen for charities, and Forbes also gives up some good information about where the money goes when donated to charity. I am not saying don't donate, but know how your dollar is being spent. I donate to charities that I know is helping those who truly need the funds. You want most of your money to go towards the people who actually need it. If your money is just padding pockets, it isn't worth your hard earned dollars. Give back, but give back to those who need it.
Thank you for all the support and love. We never feel alone with all of you by our side.
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.